Pills, Thrills and Bellyaches
New year. New drug. This blog will be an update of a disease modifying therapy I have started called Fingolimod (Gilenya).
Did you have any pancakes on Tuesday? I did. I had five. Lemon and sugar. No messing around. I love Pancake(s) Day!
In other news, I FINALLY got to see my Doctor this week and I was told that I need to have a blood test to see if I am deficient in vitamin B12. I already knew that. It feels like the whole world has told me that recently. All seven billion of you!
I had my blood test today and expect to hear the results confirming my B12 levels are completely normal in a week or so.
Where does that leave me? Well, to be honest with you, I probably won't approach my Consultant and ask for more drugs. My fatigue definitely feels like it is on the wane. I said a little while ago that it's either improved, or I've just got used to it? Can you get used to living with fatigue? Probably not. So assuming my B12 levels are normal, I'm not going to ask for medication either. So it's all been a waste of everyone's time? Well, yeah, but, no, but...
Whilst I was there, I asked to swop the Anticholinergic medication I was taking (Oxybutynin) for one of the newer ones that don't have an impact on the cognitive issues that are associated with the older ones as suggested by my Consultant.
Anticholinergic medication is used to stop the spasms and calm down the muscles in an over active bladder. In other words, you don't have that massive urgent urge to run (ha!!) to the toilet every 20 minutes. You can take my word as an expert on this subject, when I say bladder incontinence most certainly is NOT an invisible symptom!!
Doctor 'Doolittle' (No he doesn't talk to animals, he doesn't do much for his patients) told me that he hasn't ever heard of what I told him and that oxybutynin is his antichloergenic of choice. I repeated my neuro's advice - a Professor of Neurology, no less - and he reaffirmed his view and said that if I could get my Neurologist to put this in a letter, he would then (reluctantly) swop my oxybutynin for a newer antichloergenic.
He did, however, write me out a prescription for a drug called Loperamide. This is just like Imodium. It hardens the stools, so it gives more feeling when your bowels need emptying. With that you would expect more warning too. Let's hope so, eh? So my visit to my GP wasn't a waste of time then.
Do something frivolous this weekend. That's an order.
I haven't updated this blog for a few weeks now So what has been going on in 'Dan's world' in those last 14 days, you're probably not thinking.
I have been talking about the fatigue issues I was having. 'Was!' he spoke of it in the past tense. Hurrah! At this point, I feel that I should apologise for my bad grammar, because 'was' should've said 'am'. Why did i just write all that nonsense? I genuinely have no idea. So why haven't I done anything about it? Well, I have. When I spoke to my MS Specialist nurse recently, she told me that she couldn't request my Doctor prescribe me vitamin B12 injections unless I was actually deficient in iB12. She also said I would need to come in and see them if I was after medication for fatigue. My endeavours had basically drew a blank then.
More drugs are a last resort for me, so I booked an appointment to see my GP last week. The earliest I can get in as a 'non emergency' appointment is in TWO weeks time (it's in five days if you're reading this on Friday). I'll be attending with all of my extremities crossed as an aid to the hope that I am lacking in vitamin B12.
By the time I write next week, I should have some answers for you which (unlike this blog) means I should actually have something worth talking about to say.
I have had some toilet issues recently. On two occasions this year, I have been in a situation where I didn't have the necessary control of my bowels. In layman's terms - I shit myself! What a horrendous experience that was. The first time, I was at home, but the last one was in public. Fortunately, I was in an MS therapy centre where I attend on a Friday. So although I was 'out', it wasn't 'out-out', if you know what I mean.
If it happens once, you can put it down to food poisoning, or a virus, or that dodgy kebab you had at the end of a drunken night out. But twice? The alarm bells are ringing here and I know I have to do something about it. I could change my diet. It contains a lot of fruit and a lot of dairy products, neither of which I really want to cut down on, let alone stop. More drugs then?
Diarrhoea (thank you, autocorrect) is a side effect people can get from taking Gilenya. There is no way I am thinking along these lines though, because I've been taking the drug for nearly 18 months now, so it would've reared its ugly head a long time ago if that were the case. I'm going to ask my Doctor for some Loperamide. It hardens stools and I know a couple of MSers with bowel problems that take it and highly recommend it.
I've got a list of requests as long as your arm for the Doctor when I finally get to see them.
Have fun this weekend.
Fatigue has been back in my life recently for the first time in about 12 months. I'm quite content that its reoccurrence is in no way related to Gilenya. I don't know whether it has receded, or if I've just got used to it. It is quarter past nine in the evening and I'm wide awake. I'm probably not helping the situation much because as well as stimulating my tiny mind by doing this diary entry, I have got the darts on telly and nearly all the lights on in the flat. Phil Taylor has just got spanked 7-0, if you're interested.
I did tell myself that I wouldn't leave these blogs until the last minute, but just like most weeks, I have done exactly that. It is Thursday evening. I like to publish it on Friday mornings, that way I know where I am with regards to the current week I am in.
I did seriously consider not doing a blog this week because there isn't much going on with me other than the fatigue.
I did leave a message with my MS nurse a week ago, but I never heard back. They are very busy and nearly always return your call the next day, two at the absolute most. It's never taken this long for them to get in touch, so I can only assume my answerphone message has got lost in their voicemail system somewhere I did leave them another message to call me. Hopefully they'll contact me before I post this blog tomorrow morning. If they do this blog will be even longer and more boring. Sorry.
I looked into medication for fatigue. I'm going to see if they can write a letter to my GP asking them to give me some vitamin B12 injections. I know a few MSers who regularly have these jabs. Is it 3 monthly? I'm not an expert at all on this, but people that are anaemic tend to have them with that regularity.
There is a drug that has been suggested that's called Seledigine. I think it's spelt like that. There are other treatments called Modafinil and Amantadine. I'll be honest here, I'm not keen on the drug route. I pollute my body with many toxins as it is. Think I'll go for B12 if allowed.
Do something silly this weekend.
Last week I moaned a bit about the return of the invisible monster that is fatigue. I ended the blog with questions about why it is back.
I've had a couple of good days and a couple of bad days since I last wrote. The bad days culminated in falls. That's 6 now in January, one every five days on average. Not great, a bit more than the previous few months, but my falls have been more frequent in the past, so I'm not complaining. Okay I am, but I'm not, if you get me. It does seem like the falls are more common of late though.
It could be fatigue that is related to the falls. That would make sense, I suppose. Fatigue in MS is physical as well as mental. My muscles are weaker when I'm fatigued. The falls aren't balance related. It's a case of me not having the strength in my legs to keep me standing. I don't fall when walking (well, sometimes I do), my problem at the moment is transferring. I seem to struggle a bit getting out of my mobility scooter and getting onto the bed/chair/toilet, or getting back on my scooter from one of the above.
I've even questioned the Gilenya and wondered whether it wasn't working anymore, or if my body had built up immunity to it. Hang on, isn't that the same thing? Anyway, this is a tricky one to answer, but I'm going to give it a go: My body has been in decline for a few years now. All the different medications I've tried haven't stopped progression. Some ofdrugs have given me symptom relief, but it hasn't done much for the actual illness. Maybe they have and I would be so much worse if I hadn't taken the disease modifying drug route. There's one way to find that one out, but no, I'm not going to stop it.
If my fatigue is a sign of Gilenya losing its effect, you would assume that the other improvements I've noticed would also be on the wane. Well, there's a good bit of news. I still have the best control of my bladder and bowels that I've had since diagnosis.
This is the reason why I am not entertaining the idea that the Gilenya has stopped working. I've left a message with my MS nurse to see if there's any advice she can offer me any advice on my new companion fatigue. Vitamin B12 maybe?
Have a good weekend,
I didn't do a blog last week because I didn't feel like I had anything new to say about Gilenya and as my blogs of late seem to me to be getting pretty repetitive anyway, I decided not to put you through the misery of reading the same recycled rubbish again.
Over this last week though, hindsight smacked me right between the eyes as it struck me (pun intended) that there is something I should have been sharing.
One of the improvements I observed after starting Gilenya was a massive improvement in my fatigue. It was after 3-4 months on the treatment that it happened. It's stayed this way too - with the odd fatigued day or two, here and there. If I had a busy day (by my standards), I would get the fatigue of old, but a lay down on the bed for half an hour or so was often all it took for the 'head mist" and muscle tiredness to subside.
I have already mentioned that fatigue seems to be creeping back on slightly more and more frequent occasions. Well, I feel like I've had it practically every day for the last two weeks. Not the best start to the new year, eh? I fall asleep after lunch practically every day. Before Gilenya, I used to go and sleep on the bed for a couple of hours after lunch every day and even then I'd still feel pretty crap the rest of the afternoon, until finally coming round in the evening. It would often feel like I've wasted the day.
Getting out of bed in the morning is becoming increasingly difficult. I have to set my alarm for nine o'clock and I'm hitting snooze for an hour. Today (Wednesday), I didn't get out of bed till midday!
When I look back, I could say it's been on the up since Christmas. Christmas is traditionally a busy time of year, as any parent to two young children will agree. Christmas is the time of year were we all eat too much and drink too much too. Come on, admit it, you're nodding in agreement, aren't you. Obviously I've got no right to categorise everybody this way by saying 'we all' but I bet there's quite a few nodders out there.
So this blog finishes with questions, not answers, I'm afraid. Is my fatigue on its way back? Does this mean the Gilenya is losing its effectiveness? Has my body built up neutralising antibodies towards Gilenya? Or is it some kind of MS 'hangover' from the food and alcohol indulgences over the Christmas period? Who knows?
My life is a bit stressful at present, and I know that isn't helping.
I apologise about such a melancholic diary entry, but this blog isn't just about the good things about Gilenya. It is about a bloke who takes the drug and how he feels, good and bad.
Have fun this weekend,
I took over the Shift MS Twitter account last weekend. It was a very enjoyable experience; it was good fun and I met some MSers that I can have a laugh with. When I say 'met', you know what I mean. I have been asked if I would like to do it again in a few months. Of course I said yes.
The Gilenya is ticking over okay. There really isn't any change from last week, so this blog is going to be a lot shorter than it usually is. I like to keep them short and sweet because, firstly, there isn't much change in what the benefits or problems (none) I get from the treatment on a week by week basis; I feel like they are pretty repetitive as it is - read one of my blogs and you've read them all! Secondly, I believe that if a blog goes on too much, the reader will lose interest. Let's be honest here, I doubt anyone is still reading this by this point. If I was reading this, I'm quite sure I would've given it the sack by now.
I do read quite a few other blogs. Mainly ones by people with MS. I find it interesting what other people say and think, but I do have a low concentration span, so I've a habit of skimming through them after the first couple of pages. It's not my fault, I've got MS!
All jokes aside, I never had this problem before I had this illness. I used to work in London, and it's an hour's train ride away from the Costa del Southend, so when I wasn't sleeping, I was reading. I'd get through a book in a week, if not more if I had one I couldn't put down.
The book I'm reading at the moment, I've been reading for 3 or 4 months now. Seriously. I just cannot pick it up. It would be a really good book too. It isn't anything to do with the author, or the story either. It was the same with the last 2 books I read too. It must be a year since I read an entire book. Ha, listen to me, I make it sound like I'm trying to move mountains, or something.
I resolved to stop falling over and to stop swearing on New Year's Eve. I've done both twice in the 9 days since I declared my abstinence. I'm relatively content with these stats. I've got an excuse for the profanities. Actually I haven't, I've got a reason though. My football team has conceded 11 goals in a two game period that has seen us knocked out of two cup competitions. Bollocks! That doesn't count because I didn't say it out loud.
The falls can't be helped, but I can make sure to listen to my body more. Both falls could've been avoided in all honesty. I feel my legs weak, I'm low on energy, so I tell myself 'I'll just finish doing (insert the chore of your choice here) and I'll sit down'. This is when I just slump to the floor and that's when the aggravation starts. Now I've stopped that and when my legs tell me to stop, I don't tell them "In a minute", I stop.
Happy Friday, people.
Happy new year to one and all. I hope you saw in the dawn of the year in in the way that you wanted.
I did, I spent the evening with wifey, the children and a large bottle of Vodka. Yes, I did drink far too much. No I didn't fall over. Not once. That itself is a good start to 2014, let's see how long I can keep it up. To be honest, I'll have probably fallen over by the time I publish this on Friday. I've got a whole 2 days to swerve the carpet till then.
After my diary last week, I had a few tweets asking me about why a diagnosis of secondary progressive MS (SPMS) can affect an MSers eligibility for Gilenya? I probably didn't explain it properly, but in the UK, Gilenya is used as a second line treatment for people with relapsing remitting MS (RRMS).
Gilenya's primary function is to reduce the amount and severity of relapses. In doing this, it is hoped that this will delay the transition to SPMS. When you officially get diagnosed with SPMS it is because you have stopped relapsing and your body is in decline. Your disability is slowly progressing.
The scientists are pretty much in agreement that Gilenya doesn't help with the actual progression itself. Therefore it is pointless giving a treatment that at £41 per tablet, and approximately £15,000 per year to somebody who has stopped having relapses. It sounds harsh, but I can understand the decision.
I have been given the Shift MS Twitter account to use and abuse for the weekend. Think I'll use it to 'shamelessly' advertise my blog...
Have a good one,
I hope you all, like me had a very merry Christmas. I don't know about you, but I'm glad it's all over now. What do you mean it's still Christmas?
My Gilenya never turned up the other day. It was due last Monday, which isn't a problem as I always have a two week surplus when my bi-monthly delivery arrives. I usually get 56 tablets, but last month they sent me just a month's supply with a delivery schedule showing my deliveries a month apart (4 weeks to be precise). The system never got updated, so although the letter and the amount of meds with it said otherwise, they thought I was still on a two monthly delivery schedule. It's all sorted now though. They delivered some more on Christmas Eve. My God, that was boring, wasn't it? Sorry.
I shared my mobility scooter escapades with you the other week. Since then, I have been given the 'marvellous' news that my wheels are a write off. " Bollocks!", I replied to my phone when given the news. I have, however, got a happy ending to the story. The owner of the shop that had my now deceased scooter offered to sell me one of theirs for £400. I went to have a look and it is the same make as the one that has gone to silicon heaven. It is bigger, has a greater battery life and is MUCH more comfortable than its predecessor. It is second hand - hence its ridiculously cheap price tag, but it has hardly been used. No tread has worn on the tyres, and if you were to buy one brand new, it would set you back £2000. Having to shell out four hundred quid that side of Christmas certainly wasn't ideal, but what a bargain! I'm well chuffed.
My illness seems pretty stable at present. A few niggling issues, but there always is, eh?
The fact that I wasn't given the secondary progressive diagnosis means they won't be withdrawing Gilenya just yet.
Have a very merry new year, all. I will be.
I had a clinic appointment with my consultant today (yesterday if you're reading this today. Assuming today is Friday, that is) I think I'll start again...
I had a clinic appointment with my consultant during the week. His name is Professor Giovannoni, and he's a part of the Barts and the London school of Medicine and Dentistry.
I was expecting to get my official diagnosis of secondary progressive Multiple sclerosis (SPMS) and subsequently have Gilenya whipped away from me as it isn't considered to be cost effective to SPMSers. I wasn't phased at the thought of this. I've been expecting the diagnosis for 5 or 6 years now. Seriously, that's how long my MS has been progressing now, with the odd relapse here and there. 'Progressively Relapsing' I got told a while back. That's a new one, eh?
I was going to ask him about getting on the Laquinimod trial for people that are SPMS or maybe get some Novantrone (Mitroxantrone), which has been given to people who are borderline secondary progressive, but without that diagnosis, it was pointless asking. I still did though.
What to do now then? I did what I always do when I see him, I asked him for some Campath! It's name had been changed to Alemtuzumab after a few tweaks and it has since been rebranded as Lemtrada since it got its Food and Drug Agency (FDA) (for the US) and European Medical Licence (EMA) licences. Despite its licence, the National Institute of Health and Care Excellence (NICE) won't touch it with a barge pole over the cost. This decision is under appeal. That means I can't have that either.
All this means that until NICE and Genzyme (the makers of Campath) agree on a more suitable price; or until my diagnosis of 'Highly Active Progressively Ralapsing Borderline Secondary Progressive Multiple Sclerosis' turns into 'full blown SPMS, I shall continue to take Gilenya and write this weekly rubbish.
As I've been enjoying acronyms this week, I've got one more for you before I go: HAPRBSPMS. That's my very own self titled MS diagnosis from above. It's what they have told me over the years. Are youHAPRBSPMS too?
Happy Christmas, everyone.
I spent the whole of last week's blog going on about my mobility scooter adventures that I never actually mentioned the Gilenya related news that I wanted to share with you. But that is me, I'm afraid.
Had I not bored you with my self indulgent story of crashes etc, I would've told you of the visual fields test they did on my eye. For those that don't know, a visual fields test is when they get you to look into this white box and stare at a black dot. Then very small lights will flash intermittently at different places outside of the black dot. Every time you see a light, you push a button on the clicker thing they give you to hold.
The lights can be a distance from the black dot, so it's checking how far you can see out of the 'corner of your eye'. I never really understood that saying. Your eyes are spherical, circles don't have corners! Anyway, who cares, back to to point, you repeat the test with the other eye and the results will show what lights you missed and the ones you saw. That is your visual field.
Mine is okay. My left eye isn't as good as my right eye, but I know that anyway from whenever I do that optician's eye chart, where you read through a row of letters that decreases in size every time you you go to the line beneath.
They then put in some eye drops to make my pupils dilate so they can look into my macula - a spot in the centre of the retina. Because of the Gilenya treatment, they check it for swelling and whilst they're there, they check the optic nerve for signs of disease activity. They didn't find any lesions or swelling on the nerve and my macula is normal too.
The consultant also informed me that I don't need glasses either. This news leaves me content that the issues I was experiencing with my eyes in the summer haven't left any permanent damage. Dan likes this.
If you're taking Gilenya, or considering switching to the medication, I would advise you to keep an eye on your vision (yeah, I know) and report any visual disturbances you may encounter.
Getting cold in the UK. Keep warm people.
So what happened to last week's blog, you (probably don't) want to know? Well, I fell off my mobility scooter, head butted the road and gave myself concussion. When I got home, I was too confused to work out how to open my front door (that simple task took me 5 minutes). I could hardly put a coherent sentence together, let alone write a blog! I had flashing lights in front of my eyes anyway, so I have the perfect excuse for not bothering!
I had been to my local mobility shop to order a part I needed for my scooter. Afterwards I made my way back home. I wasn't 20 feet from the shop front door and my scooter just stopped. I had charged the battery the previous night, so I guessed it was something pretty serious. How's that for luck though? Of all the places to break down, it is directly outside a shop that fixes and sells mobility scooters. I think you'll agree, this story has a whiff of irony to it. Is it whiff or wiff? I've never written that word before. Probably should've just said 'smells of irony' and saved all this drivel. I still could, I only have to delete all this as far as the word 'it' and just be done with. I more than likely won't though. I quite like to share my thought processes at the time I am writing. Note to self: You're typing, not writing.
Anyway, the shop very kindly loaned me one of their scooters and took my one in for repair. I carried off on my journey back home, unhappy that I had an impending bill to pay on the wrong side of Christmas, but relieved at the point that my wheels chose to stop. I had only been talking about my breakdown plans to the bloke in the shop 5 minutes previous.
Rochford is an old town - it's practically a village - and the pavements are just as old (obviously) I'm bombing along on the pavement and it's a bit uneven and I bump myself onto the edge of the kerb. The front wheel on the left goes over the edge and that's my lot, I tip into the road. Fortunately (expressed with sarcasm) my head broke the fall. I was shaken and concussed, but no real harm done. It's a busy road. 5 seconds either way and I would've had a head as flat as a pan...pan...panini.
If there's a lesson to be learnt from this adventure, it's don't leave writing this till Thursday afternoon (like I am right now), oh!
I'll talk about Gilenya next week, I promise.
I've had a pretty good week compared to most of last week. My MS feels pretty stable. I've only had one fall since I last wrote, so Dan's a happy man.
Having said that, my fatigue has been present for the last few days. Nowhere near the Pre-Gilenya levels, but it was there nevertheless. The reduction in fatigue is probably my greatest asset (that's not the right word, but you get me) I've gained since taking the medication.
I didn't wake up this morning until gone 11 o'clock, which is a sign that something isn't quite right. I didn't go to bed late, it was about half past eleven, so a solid 12 hours sleep is a lot more than my body usually needs. I usually sleep right through the night without needing to get up and use the toilet too.
I do believe that too much sleep is worse for my MS than not enough. If I don't have enough sleep, I spend the day feeling lethargic (kind of stating the obvious there) and I might need to have '40 winks' in the afternoon. But when I'm mobile, my body largely does what I want it to. Compare this to when I have too much sleep and when I get up in the morning, my legs are rigid, and the rest of my body is limp. My balance is non existent, so sitting on the edge of the bed can be troublesome.
That's how I managed my fall recently. It wasn't a fall as such, but I ended up on the floor, so it counts. I was sitting on the edge of the bed and I couldn't bend my knees, so I just slid down onto the floor. It's like my body seizes up if it is motionless for longer than it should be.
Unfortunately getting off the floor is far more troublesome than getting onto it!
When I did the blog last week, I was feeling pretty rubbish. No reason to it, it's just MS, isn't it? We put all of our ailments down to MS, don't we. I blame everything on MS. That nasty headache I had the morning after my recent Guinness binge. That was the MS. When I fell over that night, it wasn't anything to do with my intoxicated state either. You can even blame the third world debt on my demyelinated condition if you like, I do.
I did seem to pick up slightly at the weekend, but I wasn't tip top. My walking hadn't been great and my balance was rubbish. I know, I know, I had been boozing a bit, but then my bladder became very unpredictable. I know for a fact that alcohol doesn't play a part in my newly found urgency to use the loo. It should do, and many MSers will confirm this, but with me it rarely does. Note to reader: I said 'rarely', not 'never'.
Hang on a minute. Legs, balance and bladder? I've got a bloody urinary tract infection (UTI)! But how? I take a low dose antibiotics every day as a profilaxus (I know I've spelt that wrong!). What I'm trying to say is I take antibiotics as a precautionary measure. They do say prevention is better than a cure. The reason they give them to me daily is because I self catheterise every time I piss - sorry, pass urine.
UTIs are fairly common if you self catheterise, but personal hygiene is an important factor. I have a 'gentleman's wash' every day and I wash my hands before I pi.. pi...pass urine. My plan isn't fool proof, but it puts your chances of getting bugs in your urethra at an absolute minimum.
As I have antibiotics here anyway, there is no need to take a sample to my Doctor, for them to tell me what I already know and give me something I already have here. I just cut out the middle (wo)man. A couple of days of an extra antibiotic and my bladder is tip top. *smiley face* A small glass of cranberry juice in the morning doesn't go a miss either.
It's prophylaxis, by the way.
I haven't mentioned my fatigue for a while. The reason being, I haven't had any. None at all.
The dreaded dark cloud came back and bit me firmly on the bum yesterday. I've still got it today (Thursday). My whole body feels really weak. So much so, I fell over yesterday. I had a fair bit of difficulty getting back up again. I managed to though. I always do. Well I'd be writing this laying on the floor if I hadn't!
I'm having a day off my legs today. I think I'll use my wheelchair when I go to the 'battleship' (pub) with friends later. We're supposed to be going out for lunch, but I've eaten already, so I think I'll just hit the Guinness instead. Well, why not? It's good for you. It's got iron in it! It also helps you with the psychological battle against MS. When I probably fall over later, I will dismiss MS and put it down to alcohol *pulls smiley face*
I was talking about fatigue, but (as usual) I managed to distract myself, and go off in tangents, culminating in me banging on about my impending exploits with alcohol.
Staying OFF topic, I am pleased to announce that a lot of alcoholic drinks don't have an adverse effect on my bladder. Fizzy beer does, and cider, but I can drink copious amounts of the 'black stuff' without the urge to wee all the time. The same goes for Jack Daniel's, red wine and believe it or not, vodka and Red Bull. Caffeine AND alcohol in the same glass. Seriously? Now that really doesn't make any sense.
I'm not condoning alcohol, it should drank responsibly (yeah right), but having MS can cause problems when drinking. I know a few MSers that steer clear of it because of the urgency and regularity created by an alcohol induced irritable bladder. My bladder is over active anyway, although since I started self catheterising, I am now able to hold onto my bladder for a lot longer than when I didn't.
Anyway, fatigue. I think an early night and a long lay in is required. MS is winning today, as it did yesterday. Tomorrow is another day.
Stay well, people.
I didn't do a blog on Gilenya last week as I didn't have anything new, or of interest for you. I haven't got much more this week to be honest. I wouldn't blame you if you switched off right now.
A few weeks ago, I renamed this blog. It's now called Pills, Thrills and NO bellyaches. This is referring to the complete lack of side effects I've had (not complaining) since I've been on this medication. See, I said you should've hit that red X in the top right hand corner of the device you're reading this borefest on.
The last time I looked at my blog statistics, it had 9997 page views. That means that one of you reading this right now is the ten thousandth site visitor. I'm sorry, but there ain't not no prizes or nothing (how many negatives in that apology?) but you can rest assured knowing that I very much appreciate the thought that people do read this rubbish I spout most weeks.
I hope that my documented side effect free year on Gilenya has helped to alleviate any concerns, fears even, about switching from a time consuming and possibly painful disease modifying treatment to the simple daily tablet. Gilenya does have side effects, but don't ask me, I don't know anything about them.
Oh, I nearly forgot, I have had a side effect - regular bowels. Add that to the most minimal fatigue I've had in years and better bladder control, I can't see why anybody wouldn't want to stop regularly injecting themselves and pop a pill.
I spoke last week about my appointment with an ophthalmologist who had absolutely no idea why I was there. I also said my eyes were given a clean bill of health (ish). What I never said, is that the eye doctor said that she was going to to arrange for me to go back and have a 'Visual Fields' test.
What is a Visual Fields test, you could be wondering? This time, it is me who has 'absolutely no idea' about what this Visual Field test is, but fear not, I shall endeavour to find out what it involves before I publish this diary entry.
All of these eye tests I've already had had told me one thing - I need glasses. I've known that for a while now, if truth be told. I'll have to 'bite the bullet'' and go and see an optician.
Wikipedia has very kindly informed me that a visual field test is an eye examination that can detect dysfunction in central and peripheral vision which may be caused by various medical conditions such as glaucoma, stroke, brain tumours or other neurological deficits. Visual field testing can be performed clinically by keeping the subject's gaze fixed while presenting objects at various places within their visual field. Kind of obvious really, eh?
I got the letter with the appointment date, it's on my son's birthday, in November, so that won't be happening then It'll probably the new year before I get this test now, but to be honest, my concerns have passed, so I'm seeing it as a routine check up. I shouldn't have said that, should I? No 'eye' puns here.
I had my hospital appointment today and they checked out my eyes. They lost the notes as to why I was there, but having bored you all with stories about swollen maculas on more than one occasion I was able to remind them why I was there. All in all, it's been a bit of a cock up. They got my appointment date wrong last week and now I have the Doctor asking me why I was there and what department had referred me to her!
Anyway, I did the usual triangle of letters where each row gets smaller. It was at this point all was agreed all round that I probably need glasses as I am a bit short sighted. Then the Doctor puts some drops in my eyes. One lot to make my pupils dilate, and another to 'make my eyeballs numb'! I assume the patronising old bag meant anaesthetic, but I did turn up for the appointment in a wheelchair and the general public do have a tendency to believe wheelchair users are mentally disabled as well as physically. No wait, she's a professional. She should know better.
She then looked into my eyes (not lovingly) through some microscope type thing, before giving me the good news: There is no sign of any damage to the myelin surrounding the optic nerves, and there isn't any swelling in or around either eye. Happy days! You was expecting a sarcastic reply to my 'good news' announcement just then, wasn't you?
So where does this leave me with the eye issues I had this summer? It must've been just that. The hot weather. Not optic neuritis and not a Gilenya caused side effect. And that's official.
When I think back, I was getting some neuropathic pain in my legs during the night I the summer too. Not often, but more than one occasion. That too has died right down recently. It really must be a case of the weather exacerbating my symptoms.
Any chances of an Indian summer have completely gone now, so all in all, Dan's a happy man.
Have a great weekend,
I have been talking about MS related stuff that's not Gilenya recently. The reason for this is that I don't have much to say about Gilenya. In fact, all I do seem to say about it is that I don't have anything to say about it.
Therefore Ive decided to create a second blog. This new one will not be so factual. It will be my ppinion, merely my inane ramblings about MS. I'm going to call it 'Dan's Inane MS Ramblings'. I promise it will be as boring as the title suggests.
I will keep this one to talk about Gilenya and possibly other disease modifying drugs. It might become bi-weekly now, I suppose it all depends on what is going on in the world of Gilenya.
I spoke recently about an issue I was having with my eyes. Was it optic neuritis? Was it being caused by the Gilenya? Was it the hot summer (by the UK's standards)? So many possible factors. My eyesight has settled right down of late, which suggests the problem could be to do with the weather. The heat, the humidity.
I have got an appointment to see an ophthalmologist (eye doctor) next week that I arranged back in July when my eye issues were at their peak. Even though they've settled down, I've kept the appointment. I though it was today (Thursday). I was going to give you an update, but when I checked in, they told me I was a week early! Well, I was not prepared to wait that long, obvs (sorry, but I only wrote that sentance so I could write the word 'obvs.) so I came home and rued the fact that I had got up early for nothing. Whose fault was this admin error ? It certainly wasn't my mistake. Even if it was, I'm not to blame because I've got MS! This has messed my diary entry right up!
What they WILL do is make sure there isn't any Gilenya caused, swelling of the macula (a spot in the centre of the retina). They will also be able to tell me if there is any damage to the myelin around the optic nerve.
If both of these are okay, it will leave me happy that my troublesome eyes played up because of the humid summer we had and that there is nothing sinister going on just yet.
I feel like I am just repeating what I've already said, so I'll stop wasting your time (again). Don't blame me though, blame the appointments clerk at Southend hospital: or my MS, you can blame that too.
The other week, I mentioned a new drug, potentially for people at a further progressed stage of MS called laquinimod. It is an oral therapy that is made by a company called Active Biotech, who are in partnership with Teva - the company that make Copaxone.
I'm surprised that the progressive side of MS hasn't already been tapped into by the drug companies. Up until now they've put all their eggs in the 'Relapsing remitting' basket, which from a business sense is wrong. A person with MS will generally spent a lot more of their life in the progressive phase of the illness as opposed to the relapsing remitting one. Therefore, if they can come up with a treatment for primary and secondary progressive MSers, they'll be able to sell their medications to the care trusts for the rest of the patients life, as opposed to the, 5+ years that an MSer will be 'just' relapsing remitting.
Now that might all sound a bit cynical, but lets be honest, treating MS is BIG business. We are talking a multi-billion pound industry here and all these companies would go bust if they ever did find a cure for MS.
Take, for example, the company that have the licence to sell Lemtrada. It is called Genzyme and 2011, a French pharmaceutical company called Sanofi bought them for over $20 Billion! That is not a typo. They paid over twenty billion US dollars, or +$20,000,000,000. They won't be looking for a cure anytime soon.
This is why I believe the Pharmas are only interested in treating MS and certainly not curing it. Our best bet is with all the research into Stem Cells. There's the answer, it's just waiting to be discovered.
Anyway, that's my conspiracy theory over. I am supposed to be talking about Gilenya, but I have no new news on the current treatment that I am on. The symptom relief I get is stable. Well, bar a few heat related hiccups I've had of late, but in the northern hemisphere, summer is over, so my nagging eye related and neuropathic pain issues have died down too.
Maybe Teva could trial Copaxone and laquinimod? I'd give it a go.
Campath 1h, alemtuzumab, Lemtrada - call it whatever you like, has been given approval by the European Commission to be used as a disease modifying treatment within the European Union. Hurrah! This means it can now be presented to the individual European governing bodies for a safety, efficacy and all that assessment. In the UK it's called the National Institute of Health and Clinical Excellence or NICE as the acronym goes(don't ask me where the H went, it's not my acronym, I just use it?).
Hopefully, it'll get approval pretty quickly as the treatment has far better results than any other drug on the market to date and will make a massive improvement to the lives of many MSers around the globe.
It is a very aggressive treatment. It kills your immune system, resetting it in the process and then your body will naturally rebuild it, but without its aggressive tendencies that we all know and hate. Obviously, no initial immune system will leave you open to all sorts of viruses and infections, so you have to watch who you socialise with for the first few weeks!
I tried to get my grubby mits on some Campath 4 (or was it 5 or 6) years ago when my hospital signed up for the CARE MS1 and CARE MS2 trials all those years ago. CARE2 was for people that had already tried other treatments and 1 was for those that hadn't yet tried any medication - recently diagnosed. I was on the CARE2 list and just as the trials were about to start, they decided to take part in just the one trial. Yep, you're right, CARE MS1! That's when they offered me Tysabri, which in all honestly was a pretty good 'runners up' prize.
The Pharmaceutical company that has just been given the license to sell Lemtrada to our primary care trusts (PCTs) is called Genzyme and it is up to them what they charge. Now, they have got research and trials costs to recoup when pricing the treatment, but if they price it too high, our PCTs won't use it. Us mere mortals could be the losers in the potential financial 'Tug of war' battles between 'Big Pharma' in the red corner and Governments/Private Medical Insurance companies in the blue corner. Place your bets...
Seconds out, round one!
Well, I've now started my second year on Gilenya. Lets hope the symptom relief continues for me and the primary care trust will be of the opinion that that is worthwhile for them to continue paying Novartis' extortionate fees for my medication.
So what's my disease modifying therapy plan for the next 12 months? You're probably asking yourself why am I asking you, but I'm talking to myself really. First sign of madness and all that...
I hope to be kept on Gilenya for as long as possible, but I believe it will be withdrawn at my next Neurology appointment in December. Happy Christmas, Dan!
My neuro is called Professor Giovannoni and he and his team do a research blog that I do regularly read it. It's far more interesting than my feeble effort.
I recently read one of his entries about a stage 3 drug that's been on trial. The drug in question is called Laquinimod and the best part about it is... wait for it... drum roll... it has been tested on people with progressive MS!
Laquinimod is the first drug to show positive results in that helps with disability and brain atrophy (shrinkage). Most disease modifying drugs work by targeting the relapsing and the inflammatory side of the illness. It looks like this one is neuroprotective, which in layman's terms means it's aim is preventing progression - something that no other drug has managed to do with me.
Prof G would like this ORAL therapy to be used alongside other medicines that work against the relapsing remitting side of the illness. This is exciting times for people with ALL types of MS.
Don't take my word for it, take the scientist's. Link at bottom
I can't believe I've been taken Gilenya for a whole year. Doesn't feel like it. Doesn't time fly when you're having fun!?!
On Wednesday at around 9 o'clock in the morning, I took my 365th tablet of Gilenya *note to self: check calendar to make sure it wasn't a leap year*.
365 tablets at a cost of £42 per pill comes in at a nice fat £15,330 per annum. (Kerching, as they say at Novartis) Wow! So what have the NHS got in return for their investment? In terms of symptom relief, my main benefit is, and continues to be a large reduction in fatigue. I've also noticed improvements with bladder and bowel function.
What about its affect on the illness itself? No idea. I have been slowly deteriorating for quite a few years now, and this has continued whilst I've been taking Gilenya. That's not saying that the medication isn't helping to fight disease progression. I could be progressing quicker without it.
On the face of it, I think it comes down to the path that MS is on for each individual. Mine is very aggressive. That's why my diagnosis is 'Highly Active Relapsing Remitting MS'. I'm still waiting for these remissions though!
It's been the same on Rebif though. And Tysabri. On the latter, I also found symptom relief despite there being no obvious changes with the progressive nature of the illness. I had no symptom relief at all on Rebif. Everything worsened considerably. My God, that stuff was like poison to my body.
I hope I'm not putting off anyone who might be contemplating switching to Gilenya from their current medication. I am just telling you how it is with me. No disease modifying therapy has had any real impact on the progression of the disease, and the symptom relief I get is on a par with Tysabri. The difference is that the Gilenya way is a pill, that's it.
So is symptom relief enough for the NHS to continue paying out up to £1300 a month for?
I don't think so either.
Have a good 'un,
I didn't so much as type the word Gilenya once in last week's blog. I feel like I've let you all down, but don't worry, I've got over it. I shall, however, endeavour to talk about it a bit in this one. But not just yet.
I've been getting a bit of neuropathic pain recently. Only Intermittently though, not constant. Usually at night - Just as I want to sleep! A horrible stinging and burning sensation, It feels like my feet are on fire. It goes up to my knees and stops dead. It's my legs, it's ALWAYS my legs!
I've been 'lucky' when it comes to MS related pain. It's always been present, but it has been of a minimal significance. Recently it has struck with a vengeance on a couple of occasions. On one, it kept me awake almost all night. I was not happy.
I currently take Amitriptyline for neuropathic pain. I was on 50mg daily. I should actually say nightly really, because those babies make you sleep like a, erm, a baby, but I cut down to 30mg as I was aware that they were having an imparing (is that such a word, or have I just invented a new verb?) effect on my cognition - you know, when your brain takes that extra second or two to acknowledge something has been said to you, or when you temporarily forget something unforgetful. That's an oxymoron, just for you MSers.
I was initially reluctant to increase my neuropathic pain medication because of the potential weight gain as well as the cog-fog issues already mentioned. I did a bit of research on some other neuropathic pain drugs, - Pregabilin, Gabapentin and duloxitine in particular - then I spoke to my MS nurse about my options.
She told me that all these drugs work in a similar way and the side effects are all pretty much the same. As my body tolerates Amitriptyline well, she's suggested that I stick with what my body knows and increase it as needed.
Oh (*insert your choice of swear word here*)! I don't want to increase my medication, but I have a plan. Unless this pain becomes a regular occurrence, I think I'm going to stick to the dose that is good 99% of the time, and when the pain starts the other 1%, I'm going to dose myself up with Tramadol. Obviously, it won't take the pain away, but it might make the pain not bother me and it might help me get off to sleep too.
I've got a stash of 100 50mg tablets from a time I was given them, but I never used, for a reason that escapes my mind just now. See, the cog fog is bad enough, WHY would I want to increase my meds and make it worse?
I promise to talk about Gilenya next week. Have a good one,
It says 50 weeks at the top of the page. That's nearly a year - I state the obvious and everything in this blog. Such a 'must read', eh?
Before Gilenya, I was on nataluzimab (Tysabri), and when I had been on it for the same amount of time, I would be half way between my 12th and 13th infusion. That was 12 whole days spent travelling to London, having the hour long intravenous medication and then the second half of the hundred mile round trip back to Southend in Essex. It was pretty much an all day affair.
The highlight of the day was the 'pit stop' at KFC on the way home. 2 piece variety meal with gravy by the way. Even though my Mum very kindly drove, I found the day exhausting usually and I always slept like a baby that night.
Now I just take a tablet first thing in the morning.
Before my stint on Tysabri, I was on Beta interferon (Rebif). As most of you will probably know, this medication is a three times a week injection beneath the surface of the skin. It is self medicated and the needle is less than an inch long, so injecting yourself really isn't a major issue. You do get given one of those awkward and fiddly auto inject gadgets, but to be honest, by the time you've set the thing up, you might as well do it yourself.
In 50 weeks, I would've done this 150 times! That's a lot of itchy site reactions and a lot of 'flu-like' symptoms that night and the accompanying broken sleep that leaves you feeling like crap the next day.
The 'experts' do warn you that you might endure this side effect the first few times you inject, maybe the first few weeks, even. What about the first few months, or the first few YEARS, eh, EH? Seriously, I was getting the same nasty side effects after two and a half years, as the ones I got after the very first injection.
390 times I subcutaneously injected that stuff. Why did I stick with it for so long? Because I believed it was for the best in the long run.
Now I just take a tablet first thing in the morning.
I moaned about my eyesight the other week as my vision was giving me a bit of jip (trouble). I didn't think it was optic neuritis and the Twitter community largely agreed with me.
Anyway, my initial beliefs that it was what my MS nurse refers to as a heat related 'Pseudo relapse' seem to be the case. What's a pseudo relapse, you could well be asking? They call it that because this 'glorious' weather we have been 'enjoying' in the southern parts of the British Isles can cause some MSers to believe they are having a relapse because they are enduring a worsening of symptoms brought on by the humidity.
Getting back on topic, my eyesight has got better since I last moaned about it as the humid and sticky weather has passed. Fortunately, summer doesn't last very long in this country.
I didn't drive the car for over 2 weeks because I didn't consider myself safe, but I got behind the wheel yesterday. It felt great. I know that my eyes will eventually prevent me from driving, but not just yet.
I have got an appointment to see an ophthalmologist (eye doctor) coming up. Although I don't believe I need it now, I'll still keep it. It doesn't do any harm to keep an eye on them (Ha! irony) as we all now know that Gilenya can cause a swelling of the macula (a spot in the middle of retina of the eye) leaving your vision in a similar condition of someone with optic neuritis.
The weather hasn't had an effect on either my bladder or my bowels, so the Gilenya is doing its job with those two symptoms. And my levels of fatigue are still pretty low *does smiley face*
Well that's about me done for another week. Not much to say about Gilenya, I'm afraid, but it's continuing to what it has been doing, so I'll take that.
Roll on Autumn.
Before I started taking Gilenya, I was on a drug called low dose naltrexone (LDN). It is a drug that isn't available on the NHS, so it has to be paid for by the patient with a private prescription. It isn't an expensive therapy. £20 odd per month, so I found it affordable.
The reason the NHS didn't adopt LDN as a disease modifying therapy is because the results from the clinical trials they did came back inconclusive. Some people swore by it, but many said it had no effect. Therefore, if you want to try LDN, you've got to fund it yourself.
Naltrexone is an opiate antagonist. That means the drug will stop any opioids in your system from working. It is used predominantly for treating heroin and morphine addicts, but it was tried in much smaller doses on people with MS with some success.
During my time on LDN, I felt stable. I had no improvements or symptom relief, but I didn't progress in any way.
Remember I told you about LDN being an opiate antagonist? Well, I'd been on LDN for around 6 months and I did one of my big stacks and broke my arm. It was a bad break and I would later go on to have surgery (1 plate and 7 pins). I was in a lot of pain, so the paramedics gave me some morphine nope, not a thing. They gave me some more. Nah, still in pain. They had to get another medic to give me a third lot as the other one had given me the most they were allowed to. "What do you mean you're still in pain? You should be as high as a kite!" The puzzled medic told me after my third dose of morphine.
I never gave it a thought at the time, but despite being in a small dose, the naltrexone was working against the pain relief.
I carried on taking the morphine, despite it giving me no pain relief whatsoever for another few days. After a couple of days, the morphine did start to have a minimal effect, but my arm still bloody hurt. I was laying in bed one afternoon when it hit me. I remembered that I had Wifey bring my 'ever growing' medicine bag to the hospital for me, but the LDN has to be chilled, so it's kept separate from my other meds. I'd forgotten all about it. Hang on, that stuff is stopping the pain killers from working! I hadn't had any for nearly a week and the morphine was very slowly starting to have effect.
I haven't had any since. As soon as I came out of hospital, I was told I would be having Gilenya in the near future, so I never bothered re-starting the LDN.
I'm contemplating having another go on LDN. Shall I wait till they withdraw Gilenya or shall I get back on it now? I don't know the answer to that just yet, but before you question why I've made you read all that, it's because I haven't got any updates on Gilenya, it's all ticking away quite nicely.
Last week I spoke about a few issues I am having at present. I never gave it a thought, but they do have to test your eyesight when you've been on Gilenya for four months - I think it was four months. It was so long ago now, I can't remember? - Anyway, they did the tests and were happy with the results, so they discharged me.
I doubted that the medication has anything to do with my current eye issues, but I didn't want to take a chance with my eyesight, so I rang up my MS specialised nurse and left a message with them to contact me. After speaking with my consultant (via my nurse), I am expecting an appointment with an ophthalmologist who will examine my eyes. Lets see where that gets me. They don't think it's optic neuritis either, so it's probably nothing.
There has finally been the first case of progressive multifocal encephalopathy (PML) that has been attributed to Gilenya. I think 'finally' is the wrong choice of word, but what I mean is that it was always going to happen. Any treatment that stops the immune system from crossing the blood-brain barrier will have a PML risk.
There are 71,000 MSers worldwide on Gilenya and to date there has been around...?...cases of PML (At this point I was hoping to be able to give you a definite figure as I know there are examples of post Tysabri patients who've sinced moved onto Gilenya and subsequently been diagnosed with PML). These have all been attributed to previous disease modifying therapy - namely Tysabri - but the PML case that's hit the news over the last few days has no link to Tysabri whatsoever. It is the first and it certainly won't be the last.
Tysabri, however, has had 350 odd cases as of April this year, and almost 1 in 4 have died. To be honest, I think they're the lucky ones. No seriously, if PML doesn't kill you, it leaves you heavily disabled. I do apologise if I've caused any offence with that statement, but if I had a choice between those two scenarios, I'd take the easy way out.
Anyway, so our chances of getting PML whilst on the oral therapy are greatly reduced. I don't know about you, but I have no intention of stopping this tablet a day therapy. If they take me off it, so be it, but until they do, I'll stick with it.
I feel like I have been banging on about a host of other stuff recently and not talking about Gilenya. Gilenya is stable, so I am afraid I won't be talking much about it, so please feel free to push that 'X' in the top right hand corner of your browser window, if you don't want to hear my inane ramblings about the next thing that enters my head.
You still here? Well you have been warned!
I think I am starting to get optic neuritis. It is a common symptom of MS, and I suppose I am 'lucky' to have not had this problem previously in the seven years that I've officially had this bloody illness.
I've noticed recently (7 days) that when I focus on a certain point, it isn't instant and it feels like my eyeballs are rattling about inside my head until they get to where they're meant to be. This all happens in a split second and then they are fine again. I have been getting a fair bit of pain behind them too. No double vision yet.
I don't know if this is the start of something or if it is down to this heat? Yeah, yeah 'I'm in denial' you're saying to your device right now. The thing is though, they are completely fine right now (21:45) and have been for hours - just like every day. When it's hot - forget it. When it's cooler, they are fine. It means I'm not driving at the moment and if it isn't a heat issue, then the car will be getting the Spanish archer (El Bow) Geddit? I'll hang onto the car until cooler weather and hopefully there'll be no further problems. I'll just have to wait and see. Only filled the tank up the other day. That was a waste of 80 quid! Still on a positive note, the fridge is rammed full of Stella. See my glass is half full! Hypothetically speaking, that is. In reality, mine is empty...
*gets another beer from the fridge*
I looked into the drugs that are going to be used it that secondary progressive trial I spoke about last week and they're all tried and tested medicines. They're called ibudilast, riluzole and amiloride and are currently being used on ailments such as Amyotrophic lateral sclerosis (dunno either), hypertension, asthma, stroke and heart failure.
I've probably bored you enough about non-Gilenya matters, so I'm off.
I mentioned the other week that they believe me to be entering the secondary progressive phase of the illness. I also said that I know that I have had secondary progressive MS (SPMS) for three years at least.
When I 'officially' get the word progressive attached to my diagnosis, they will withdraw my eligibility to have Gilenya. Sounds a bit harsh, right? Well, yeah, it is, I suppose. It's not the end of the world though. I know I am repeating what I have already said, but they have (only) just started looking into medicating people that are more progressed than the relapsing remitting stage of MS. Before a progressive diagnosis would mean you were given a wheelchair and sent on your way, but things are starting to change for (us?) more progressed MSers.
This is where I get to my point. I have registered an interest with a drug trial for people with SPMS. It supposedly starts in the Autumn of this year. Now anybody that knows anything about drug trials will tell you that that means it will more than likely start this time NEXT year. That should fit in nicely with my SPMS diagnosis.
The trial itself is called MS-SMART - who makes these bloody acronyms up? It is being funded by the Medical Research Council and the MS Society. It will use three different drugs. You will be given ibudilast, riluzole or amiloride.
I've never heard of any of these drugs, but they have all shown promise when used on people with SPMS, so as soon as I've finished this blog, I'll be off to Wikipedia to do some research. I won't be reading about the side effects though!
I don't know what will happen with this blog when Gilenya has been withdrawn. I'll probably keep it going. I mean, Gilenya rarely gets a mention these days anyway. What it has helped with are stable, so no news really is good news. I'll just stop advertising it as a Gilenya diary, I suppose.
Enjoy the sun, if you can.
I'm sure I mentioned to you recently that I started taking a new drug for spasticity. The plan was to replace the anti-spasticity drug Baclofen with a different anti-spasticity drug called tizanidine (Zanaflex). Well I got the latter up to the maximum dose, but I didn't notice any improvement. I did, however, find my legs weaker, so I immediately started cutting down on the Baclofen till I was right off it and taking only tizanidine. I'll get straight to the point - It doesn't work anyway near as good as Baclofen with me.
There is an old metaphor: If it isn't broken, don't fix it. Well that's not quite the case, so I've invented a new one for you, ready? *drum roll* 'If it IS broken, but still works a little bit, don't try to fix it, as you'll make it worse!' I made that up all by myself. I am getting the copyright on it tomorrow, so plagiarise me and I'll sue! I won't really, I'll probably forget to.
I've got a bit of a shitty story for you. I had diarrhoea in the week. (Pun intended, by the way). Now you MUST be asking yourself why I am telling you this? I just wanted to make a note of it because it is a recognised side effect with Gilenya. I know it is nothing to do with Gilenya because I've been on the medication for almost a year, but I still thought it was worth the mention.
I was reading an article the other day about Gilenya and it said that it has been approved by the Food and Drug Administration (FDA) for 3 years now. The original stage 3 trial started 4 years prior and as in a lot of cases, you are kept on the drug when the trial has ended, (I have a friend who has been on Tysabri for 11 years now!) means there are people that have been on this 'new' treatment for *gets calculator* - 7 years. I wouldn't mind speaking to some of these people to see how they feel their illness has progressed - if at all - in that time. A link to the article is at the bottom of the page.
In the first 6 months taking Gilenya, I believe I had stabilised, but now that march towards progression is in motion again.
I apologise about ending on a not so bright note, but I don't work for Novartis, so I'm not here to promote their product. I am just saying it as it is.
Have a nice weekend, all.
I don't know about you, but where I am (the UK), I've been getting plenty of vitamin D. It's been hot. Too hot in fact. The weekend just gone has been a hot one. The actual heat, or the sunlight isn't the problem. In this country, you can't have heat without the dreaded humidity accompanying it. We are all different. I know MSers that worship the sun. In fact, my old supervisor at work had MS too, and he actually moved to Australia because the heat helped to minimise his symptoms. I have been told that the heat is different abroad. It's not so close as it is here, so it isn't humid like it is here in good old Blighty (England).
I haven't had the courage to try that theory out yet, but wifey and I have discussed the idea of going on a cruise on the Mediterranean maybe, catch a bit of sun AND sea air. Call me a coward all you like, but the thought of spending all that money just to more than likely make myself feel more ill than I usually do seems futile. Anyway I take 5000 international units (iu) of vitamin D3 every day. That comes in at 1250% recommend daily amount (RDA).
There are firm beliefs that a lack of vitamin D could be just one of many factors that could possibly contribute to you being at risk of having MS. There's a lot of ifs, buts and maybes in that statement and somebody of a more cynical disposition might say that they're saying it like that, because they simply don't know. They could also question the point in recommending you take high dose D3 supplements even though your MS has already been recognised (diagnosed), as it seems to be nothing more than a case of 'Locking the stable door after the horse has bolted'. I don't know, but for what they cost - peanuts - ill take them anyway.
I do give vitamin D3 supplements to my children too. They are 10 and 6 years old and they both have 2000iu each day. They come in the form of a strawberry chew, so there's no difficulty in getting them to take them after they've had breakfast. Who knows if it will help, but it can't do any harm. If you have MS and kids, I would advise you to speak to your consultant about what dose they think you should give them. Here is what mine recommends:
If I knew the answer to that lot I would be a very rich man. Alas, a very rich man who still has MS and an expanded disability status scale (EDSS) score of 6.5. All of a sudden money seems pointless to me. Every penny in the world couldn't buy my health.
Anyway, it could be worse. Some of my symptoms may be exacerbated due to the weather, but there is none of the worsening of fatigue, bladder and bowel (kiss my arse, fate) issues that I was expecting to appear with the warmer weather. Thank you, Gilenya.
Don't forget the factor 50 suntan cream, people.
Before I start, I feel like the need to apologise about last week's blog. Lets be honest, it was pretty crap - more so than usual, even. I was on holiday (kind of), it was pretty much chucked together at the last minute and I even forgot to talk about what had been in the news concerning MS that week. Not my fault, it's the MS, blah blah blah.
Had I made more of an effort, I would've mentioned the exciting news to come from the Northwestern University Feinberg School of Medicine, in Chicago where they have been working on a new treatment that targets only the proteins that come under attack when the immune system fails to recognize them as a normal part of the body. Researchers hope they will be able to cure the disease but leave the rest of the body's defences on guard.
Good old copy and paste, eh?
What they are basically saying is that current medications are immunosuppressive - they stop the entire immune system from working, whereas this new medication only targets the parts that come under attack, leaving the rest of the immune system to do its job and fight off infections and other foreign bodies.
These results are taken from a small stage 1 trial, so it is still a long way off from being administered to the masses, but it is another step in the right direction, and Dan likes this*.
Obviously this news is over 2 weeks old, so it's 'old hat' now, and you're probably telling yourself that you've read about it via a million links that have already appeared on your Twitter timeline. Well, what can I say? I am a bit slow on the uptake, but that's not my fault, is it?
Before I go I want to tell you that I have restarted my exercises and I have got a bit of much needed strength back in my legs. I've lost count how many times I've fallen over in the last month, or so. The humid weather saps my energy, so much so, the mild exercising regime that I have got actually makes me worse. Anyway, the milder weather this week has got me back on track and I haven't falling over for over a week.
*I am aware that referring to yourself as the third person is a sign of madness, but I firmly believe that a little bit of insanity gives you great armour in this battle with MS and your homework this weekend is to do something frivolous.
Stay crazy, people.
I've spent the last week at my Dad's in Norfolk. It's been nice to run away from Essex and all the stresses that come with it. I don't know who bloody invited MS though, but it came with me *colon/hyphen/close bracket* At least I tried!! Wouldn't it be great if we could have a holiday from illnesses? I'm not greedy. The last week in July, and the first week in August please? Oh, and a couple of days over Christmas too, if possible.
One of the listed side effects with Gilenya is diarrhoea ( thank you for that, auto spell). Despite all the spicy food I eat, I never get this bowel problem - yep, tempting fate again. It's true though. My bowels were regular before I got ill. Every day without fail, I'd empty them. MS though, has made them go from one extreme to another. I could go 7 to 10 days even, without going, and when they Finally did go, boy do they go! Enough of that.
This has got me wondering: since I stated taking Gilenya, I now go regularly. I believe that what some people would say is a negative side effect affects me in a positive way possibly?
My fatigue has been rubbish since I last wrote. Even in the country, the humidity has been quite intense and in turn , my legs are crap and my hands are so numb its like wearing boxing gloves. It makes mealtimes a challenge, I can tell you. Roll on Autumn...
I have been on Gilenya for the same amount of time as a gestation period of a human baby. Where does the time go?
I went to see my Neuro last week for the usual six monthly check up. I've been given an extended disability status scale (EDSS) of 6.5. I don't know how the point five has come about. I thought it was a straightforward one to ten, but there you go.
We also spoke about the fact that I am entering the secondary progressive stage of the illness. I've spoken about this before, so I won't bore you twice on the same subject. That would be really boring! The bottom line is they will more than likely stop treating me with Gilenya in a year's time. At least I've been given a year's notice. The only concern I have with this is the theory that once you've stopped taking an immunosuppressive drug like Gilenya, your immune system kicks back in again, only it's more aggressive. Fingers crossed, I won't have slipped any further down the EDSS scale and they can see that my stability IS cost effective, and they keep me on it. It's all about the money at the end of the day.
She also wrote me out a script for a drug called tinizidine (trade name Zanaflex). This is an anti spasticity drug, like Baclofen. My legs have stiffened up a fair bit of late, and as I've already said about my reluctance to increase the Baclofen, it was agreed I should take something else. That's where the tinizidine comes into play. It can either be taken alongside Baclofen, or it can replace it altogether. My plan is to do the latter. You can't go in at the desired dose, but you have to titrate the drug slowly. I am up to three 2mg tablets per day. I think you can go up to 16mg per day. I know I can go a lot higher than what I'm on at present. The plan is to hit 12mg, then cut down on the Baclofen and see how it goes.
So what next on the SPMS and treatment front? Keep my ear to the ground and try to get my backside on a drug trial for people that are SPMS. That something that they're finally looking into. Up until recently, if the word 'progressive' was included within your diagnosis, you were put in the corner of a room to waste away, because it was universally believed that there is nothing they can do for you.
They are recruiting for people with SPMS to go on a Tysabri trial that I know of. They're also recruiting primary progressive MSers for a drug called Ocrelizumab, so we've all got some hope, regardless of where we're at with this illness, so I'm not prepared to give up yet, and neither should you be.
Well, guess who's having a right crap time at the moment? Yeah, your's truly. It's the weather. It has made a mess of of my legs and my hands are so numb, I can barely hold a knife and fork. My legs are rigid most of the day. I can only bend them at the knee using my arms.
I tried to combat this by increasing my anti spasticity drug Baclofen from 40 mg a day to 60. This has made no difference whatsoever. I'm reluctant to go any higher as the drug does have a bad press. You see, Baclofen relaxes ALL of the muscles in your body. It doesn't just target the area's that need it. Prolonged use can make your muscles weak, eventually causing muscle wastage. I want to hang on to what I've got for as long as possible. I even know of some people's claims that Baclofen has put them in a wheelchair! I don't know about that, but it is considered a very controversial drug to take in some circles. You're damned if you do, and you're damned if you don't. Anyway, I've gone back to my original dose of 40 mg of the Baclofen. There's no point taking the extra if it isn't helping me.
So why the change? It happens every year. It's the weather. Although I am worse this year. It's not even particularly hot. It's just hitting 20 degrees, but it has literally changed overnight. We had snow at Easter on the Costa-del-Southend, and in some parts of the UK they had snow in May! It's the sudden change in the weather that's done me. That's my opinion anyway.
Fortunately the Gilenya is still doing its bit. I had wondered if my body was starting to build up antibodies against it. Fatigue has made sporadic appearances, but it's still only minimal and I am keeping my eye on it. However, I am expecting to see more of it as the temperature rises. I haven't had to go to bed at any stage since I've been popping this daily pill, so when it does crop up, it is manageable.
It's just a shame that this treatment never made an impact on my ability to walk, or even the spasticity. That's one symptom I could really do a bit of relief from at the moment.
Last week I mentioned oxybutynin and its possible effects on cognition. My GP said the dose I take won't affect it, so I've asked my consultant, but they haven't got back to me, so I'm none the wiser and still on the older anticholinergic. I've got a clinic appointment in June, so I'll ask in person the if I haven't heard by then.
I'm also going to ask about my MRI scan results, and if there are any visible signs of cerebral (brain) atrophy on them. Atrophy is when the brain shrinks, and I know what you're thinking - actually, you're probably thinking, why does he always tell me he knows what I'm thinking? Ha! And now I've forgotten what I was actually going to say. It'll come back to me in a minute and I'll add my point and then I shall delete this nonsense.
Brain atrophy. Many neurological illnesses cause the brain to shrink and MS is one of them. I remember what I thought I knew what you were thinking. You were assuming my brain must've shrunk considerably. Worth the wait? I don't think so either.
I am curious to know how my scans shape up compared to the general public. My MS has progressed quickly and I wonder if it has had an effect with tissue wastage. When that damage is done, it's done, irreversible. I reckon that's a sign you've crossed over the threshold from relapsing remitting MS into secondary progressive MS. For the record, I believe that diagnosis is due any day now. I've been expecting to hear it for 2 or 3 years. I'm not bothered, it's just a word at the end of the day. We are taken out of one 'pigeon hole' and put in another, that's all.
This is where I contradict myself over what I've just said because there is a concern that I have with the secondary progressive tag, and that is about my medication. Will they withdraw it if I am deemed progressive? I honestly don't know the answer to that. I mean it definitely is helping. Of that I have no doubt, but will the powers that be decide that it is no longer cost effective giving Gilenya to somebody secondary progressive? Am I clogging up the system? Is my being inside said system delaying another patient's inclusion? I will do my upmost to stay on an effective drug for as long as possible, or am I being selfish?
Or what about the theory that when you stop taking an immunosuppressant (Tysabri, Gilenya, Novatrone, etc), it kickstarts your immune system, thus making it more aggressive than it was before you started taking the treatment? The relapse rate of MSers coming off, say Tysabri to start a new disease modifying therapy is higher than average. That's exactly what happened to me.Bit of food for thought for you.
Maybe I shouldn't instigate this issue when I see my neuro next month...
Well guess who didn't make it to have some hyperbarick oxygen last Friday ? Yes, yours truly got a puncture less than a mile from home by the time I got the tyre fixed, I didn't have time. It's not the end of the world though. I don't even know why I've wasted your time telling you. Sorry about that.
Last time I wrote I was quite fatigued and I said I wouldn't fall asleep. Well I did! So what do I know about this illness. You're probably asking yourself why you read this fool's blog. If I wasn't me, I wouldn't read this inaccurate rubbish either.
I don't know if I've mentioned it or not, but due to an overactive bladder, I self catheterise every time I wee. I use the Speedicath Compact male by a company called Coloplast. They're called 'compact' because they are just that. They come in a green plastic tube that is about 8 inches long. "You what? my urethra is longer than that!", is what any male catheter user would say right now if they were reading. The way it works is that as you pull it out of the case it extends to nearly double that length. A bit like an old radio aerial.
That's the advert over, so I'll get to the point I was going to make, and that is that to help with my excitable bladder, I take a drug called oxybutynin. Oxybutynin is an anticholinergic, which means it interferes with the path of the nerve impulses. As they calm down, the muscles around the bladder relax and the constant urgency subsides.
I was reading a blog that my Neurologist writes and he's said that there is a link between older anticholinergics (such as oxybutynin) and cognitive impairment. I'll put a link to the blog at the bottom, if I remember. Newer anticholinergics don't cross into the brain like the older ones, and therefore don't contribute to the 'cog fog'. He then advises anybody taking a drug like oxybutynin to go and see your GP and ask for something different, something newer.
So guess where I went yesterday? Yep, I went to see my GP about oxybutynin and he says that the dose I take is low (7,5 mg), so it won't affect my cognition. He also says it is by far the most effective eanticholinergic on the market. I'll have to speak to my consultant about the dosage and see what he says.
For the record, I am not on Coloplast's payroll. The male compact Speedicath catheter really is that good. Try it.
Well we've hit May and the weather has finally turned. I'm not great in the heat. Every year I hope it doesn't play havoc with my symptoms and every year it does. It's not the heat that does me, it's more the humidity. It affects my legs the worst. I've fallen over twice already in May. Once was self inflicted (hic) and the other was a balance issue. Both times I bashed my head and I did suffer a lot of pain. No permanent damage though.
Speaking of falls, I got through the entire month of April with just one fall - and that was in the very last day in the month. I've said before that this is more than likely the exercises I do, rather than the Gilenya.
That fall along with the two others I've had at the start of this month means I've had three in a week. That's a bit of a worry. Despite the leg strengthening and core stability exercises I do, I haven't been so stable on my feet. I don't know if it has anything to do with the change in the weather, or not, but I'll monitor it. Maybe I should cut down on the booze a bit too!
I've had a couple of occasions where I've had fatigue this week, but I can live with that. Compared to pretty much constant, it's a massive improvement, and one that is a most welcome relief.
As I write this (Thursday), I have fatigue. I felt fine this morning and I went to the pub for lunch with my uncle. I had burger, chips and a pint of Guinness. I got back about 4 o'clock and out of nowhere - guess what? Yep, the fog was there. That dark misty sensation that lets you know that every muscle in your body is exhausted and every movement, no matter how minor, will be extremely laboured. There's nothing you can do about it, so you just go with it. I'm just laying on the bed now and listening to music as I type this. It's the Yeah,Yeah,Yeahs new album - Mosquito. Nice chilled out music.
I won't crash out. I did for about half an hour, or so when I first got back, but on these rare occasions that I get fatigued, I can honestly say that the fatigue isn't as deep. You know what I mean when I say 'deep'. I credit Gilenya with that. Long gone are the days where I would sleep for two or three hours after lunch every day. It's so nice to have finally found a drug that is beneficial for me.
It may sound strange me saying that despite this black wall in front of me, but I expect to be fine in an hour or two. I might even do some leg strengthening exercises later. Then again, I might not.
Hyperbaric oxygen tomorrow.
Happy weekend, people.
I was supposed to get back to you all last week about my fatigue, but my MS made me forget; not my fault.Had I remembered to include my findings I would've told you that other than the two occasions mentioned where I had fatigue, there were no other times up until last Friday where I had any. Over the last seven days, I have experienced fatigue on just the one occasion - Wednesday afternoon. I can live with that!
I restarted my hyperbarick oxygen therapy (HBOT) last Friday afternoon. For those that don't know, HBOT is where you breath 100% oxygen at a depth of 33 feet below sea level.
It was nice getting back in the submarine again. Okay, it's not a submarine and it doesn't actually go under water. It feels like you're in a submarine though. You get locked in a large metal cylinder and they adjust the air pressure until it's the equivalent of being 33 feet below sea level. This takes approximately 15 minutes to. 'dive' to this depth and at this point, I need to point out that you can forget this treatment if you suffer with Claustrophobia as that door won't open until the air pressure is identical on both sides of the door. When you reach the desired depth, you put on a mask that has been connected to an oxygen tank, and, erm..., breathe. And that's it. The oxygen is pure oxygen.
When we inhale air, about 70% is Nitrogen. You've got some inert gases too, and the remaining 20% (ish) is Oxygen. Obviously the oxygen you're inhaling in the tank is 100%.
That's the Science lesson over, now back to why HBOT helps me. You're having the oxygen for an hour at a time. I don't notice any changes straight away, but that evening I feel more alert, my cognition is better. You know what 'cog fog' is like. I suppose it is all linked to fatigue which is better. Also my bladder is much better. I can control it more. It's a bloody nightmare when your bladder is in control of you!!
I should point out that trials were done on this therapy for people with MS, but the results came back inconclusive, so the National Institute of Clinical Health and Excellence (NICE) (why isn't it called NICHE?)chose not adopt it as a therapy for MS. Basically it helps some and makes no difference to others.
My fatigue and my bladder are two things that have improved since I started taking Gilenya. I know it's the drug that had caused these improvements because I stopped the oxygen when I started the medication. If I had continued my oxygen, I wouldn't know if the Gilenya was working.
The effects I get from the oxygen don't last forever. I go in the tank on a Friday and I'm good for the weekend. I would go twice a week, but unfortunately they're not open every day.
I would definitely advise you to look into it and see if you have a hyperbarick oxygen chamber near you. I'm lucky, the one I go to isn't even 20 miles away. What harm can it do? There are no adverse effects to breathing in oxygen. Nothing can go wrong. Go on, try it.
Enjoy your weekend,
As I am on roll talking about Gilenya's side effects, and that is the actual reason you are reading, I'm going to talk about it a bit more.
Gilenya can cause a swelling of the macula (a spot in the centre of the retina of the eye), generally within 3-4 months of starting treatment. Macular swelling can cause symptoms similar to those that occur with an attack of optic neuritis, or may not be noticed at all.
I haven't experienced any problems with my vision since I started taking Gilenya and when I went to see (irony) an Ophthalmologist (eye doctor) for a routine eye examination after 3 months, they couldn't see (irony again) any swelling inside my retinas. As they were happy that I had swerved this potential side effect and I didn't need to see (last one) me anymore, they discharged me. Yay!
I did have an incident with my left eye back in 1998 when I woke up one morning and my vision in that eye was a bit blurred. Nothing massive, but after a few weeks I went to see (that really is the last one) an optician. He had a look (no more puns, eye promise) and said I needed to go to the eye unit at my local hospital and see (sorry) an ophthalmologist. After they had examined me, they told me that there was something behind my eye? They said it was more than likely fluid, but if it didn't clear up within two months to go back and they would investigate further. Did you notice that I resisted the urge to say look instead of investigate back then?
I've still got it to this day and I've always wondered that if I had gone back, would it have led to a diagnosis of MS seven years before I had my first official relapse and subsequent diagnosis? For the record, I believe I made the right decision to not look further into my eye issue when I was 24.
In other news, I think the fatigue is slowly working its way back into my body. That dark fuzzy mist is making an appearance. Only sporadically, but it's starting to rear its ugly head once more. Only for an hour, or two, but it's there nonetheless. I did say a few weeks ago that it cropped up for an hour or two 'here and there', but I do think the regularity has increased; not every day, but definitely 2 or 3 times a week. I am writing this on Tuesday and I've had some this morning. I also had it Sunday afternoon. I'll monitor it this week and let you know how the next few days have gone when I publish this blog on Friday. It's definitely something that needs keeping an eye on...
Eye apologise for the puns, but I did warn you of my returning to foolishness after such a sensible blog entry last week.
Enjoy your weekend,
Last week I gave you my opinions on the drug BG12, shortly before I did a couple of minutes research and discovered I was talking out of my backside. This time I have made an effort and got my facts right about the POSSIBLE side effects of taking Gilenya before I preach to you.
The most common side effects during the trials of Gilenya were headache, influenza, diarrhoea, back pain, abnormal liver tests and cough. I put the word 'possible' in capital letters in the last paragraph because some, none even are guaranteed. If you've read my blog more than once (doubtful), you will know that I've had no side effects whatsoever - except maybe one, flushing. Hang on, that's not on the list, you're thinking? It isn't, but I copied and pasted the above list from the National MS Society website. I read about flushing elsewhere. I do seem more heat sensitive of late, which means a slight rise in temperature has me whipping off layers of clothes. I'm not great in the heat, post diagnosis, but I do feel like the sensitivity has increased. Lets see how I cope with the long, hot British summer this year!!!!!
Note to reader: I express sarcasm through exclamation marks.
Gilenya may cause liver problems. Your MS specialist nurse will do a blood test to check your liver functions before starting treatment. I had one on the day of my first dose and another one after Three months. Once you are on treatment, they want you to tell them if you have any issues with nausea, vomiting, stomach pain, loss of appetite, unusual tireness, dark urine or a yellowish tint to your skin or the whites of your eyes. As you know, I've had none of these side effects. That looks a lengthy list, but read the list of possible side effects on a packet of paracetamol, they list drowsyness as well as insomnia, or diarrhoea as well as constipation, so don't let it put you off the treatment, if it is something you're considering.
Like I've already said, I haven't noticed any of the side effects I've mentioned in this blog (except possibly flushing).
Before I go, I haven't fallen over once this month and we're almost 3 weeks into April! I must be due a double fall this weekend. Lets see how I go...
I apologise if this blog comes across as sensible and informative. I'll be back to my usual puerile nonsense next week.
My latest batch of Gilenya turned up on Monday. I can't believe it's been two months since my last delivery in February. Mind you, the weather we've had in the UK of late could easily lead you into the false belief that it is still February. We've had snow on and off since the end of November - and it's bloody April!! It has turned though, and spring is finally here. They reckon it will be 18 degrees celsius at the weekend in Essex.
There's been a bit about Tecfidera or dimethyl fumarate ( lets just call it BG12, shall we?) in the press recently. Apparently it is going to cost about $55,000 per annum. That's US dollars, so I make that about £35,000 in English money - At this point in time, I need to point out that my mental arithmetic is crap, but that's not MY fault...
Back to money. According to my maths BG12 is going to be over twice as expensive as Gilenya. The same with Tysabri, come to think of it. Why is that? Don't ask me, but if you did, I would tell you that I assume that there is less risk involved and the company that developed the drug (Biogen) are using this fact to blackmail our primary care trusts (PCT) into paying massively inflated fees for drugs with a better safety record. The problem with this is that the PCT's governing bodies won't 'play ball' and and life changing medication won't be adopted as it isn't cost effective. The loser here is obviously the patient, as per
Call me an old socialist if you like, but I believe that profit making organisations shouldn't be involved in the process of researching and producing new medicine. Our Governments should take control of this, but unfortunately we need a time machine to go back 50 years to when services were in the public domain and they hadn't realised it was cost effective to outsource various services to private corporations. Anyway, I thought BG12 worked in a similar way to Gilenya and Tysabri. Eg, it stops the white blood cells (immune system) getting past the lymph nodes and into the nervous system, therefore proposing a risk to people that are positive with JC virus. I probably should make more of an effort and do a bit of research on the stuff I write about on here, but that is far too organised for me. I will find out about how BG12 works and get back to you... one day.
I just had a look on Wikipedia, and it says that BG12 is NOT an immunosuppressent. That means you've just wasted five minutes of your life reading this blog, sorry.
30 weeks! Wow, time flies when you're having fun!
This has been my hardest entry to do yet. I find it difficult telling you about my Gilenya 'journey' when I rarely have anything new to report. That's probably why I've been going off in tangents speaking about other stuff recently.
So, Gilenya: I think it's working. I'm sure it is? My fatigue has improved greatly, as has my visits to the toilet. I use it less to wee, and more out of the other end. I empty my bowels more or less every day. They haven't been this regular since before I got diagnosed with this illness.
Although my fatigue is still minimal. I have been wondering if (or when) it is going to start to rear its ugly head again. That does sound somewhat pessimistic, but when I started taking Tysabri, I noticed improvements within a few months, but within six, they had subsided and symptoms had returned to their pre-drug levels. Therefore I feel my pessimism is more of a realism. Long may it prove me wrong. I will keep you all updated on my fatigue situation.
I do still get a couple of hours here and there where fatigue stops me from doing anything. But we're talking once a week, and it certainly doesn't reach the level of where I have to go to bed and sleep. I just mong out in front of the telly for a bit and don't move. Hang on, I do a bit of that anyway, so what's the difference?
I managed to get through March having 5 falls. That ain't bad. One of the falls was after I had been put in a situation where I had walked further than my legs would normally allow and they gave up on me. Just as I reached the car too! Two were drunken trips and the remaining two were sober trips. I'm fall free so far in April. Yeah, yeah, it's only the 5th, but, so what? Let me congratulate myself here. I probably shouldn't gloat though, because using the law of averages, I am due one any day now...
Have a fantastic weekend, all
I've been speaking about stuff other than Gilenya recently, and I do apologise. You aren't interested in the previous medications that I've tried that haven't worked; you want to hear about the tablet I take that does work.
Gilenya does have a bad press. The license was reviewed after somebody died after taking a single dose, this time last year. Scary right? Well, when you take Gilenya, it reduces your heart rate. My pulse varies between 70 and 85 on average, and it dropped to 67 after my first dose. That isn't an issue, but it is believed that the person who died had underlying heart problems which would've contributed to the fatality. So it isn't the actual drug that can kill you, but a side effect can. Well, that's okay then, right? No, it isn't, is it?
So how do you know whether you have underlying heart problems that possibly haven't surfaced yet? We don't, that is why you have to have your first dose of Gilenya in a hospital where you have spend at least 6 hours (take a book). You are wired up to an ECG machine and the activity of your heart is constantly monitored. If they have any concerns, they'll keep you in overnight. Nothing is left to chance.
This is why I can (rightly or wrongly) state that I believe that Gilenya is initially a safe drug to take. There. I said it. Put my head on the chopping block then, but that is MY opinion, a patients perspective. Nobody knows the long term effects of Gilenya. That's a 'wait and see' situation, time will tell, etc, etc. But thats just like all disease modifying drugs, as they've only been around for 20 or so years at the most.
I'm not sure about the risks of... you ready for it?... Progressive Multifocal Leukoencephalopathy (PML) as I believe it works in a similar way to Tysabri, which does have a PML risk. Especially if you are JC virus positive like me.
I would like to thank Apple for the auto correct function on their devices that kicks in and predicts Leukoencephalopathy after the first five letters.
Have a happy Easter, all. Eat too much chocolate and drink too much beer. I will be.
Last week I banged on a bit about the different types of disease modifying drugs I've tried. I forgot to mention one. Look, it's not my fault. I have got MS you know!
After I came off Tysabri last year, I tried low dose Naltrexone (LDN). For those that don't know, Naltrexone is an Opiate antagonist. In other words, it is given to heroin addicts (and other opioids) to stop it from working. It is believed that the feel good hormones it creates helps with the 'cold turkey' the addicts endure coming off their preferred choice of drug.
Trials were done with Naltrexone in low doses in MS, but from what I gather, the results were inconclusive, so it wasn't adopted as a treatment for this illness. That means they never licensed the drug for MS so you can't get it on the NHS.
I was on it for about 4 months. The increase of serotonin in my brain was nice and the world was a much brighter place. Did I say the words 'at first' in that last sentence? Well I should've done. Other than the initial rush of Euphoria, it didn't do anything to help with this disease.
I know people that swear by LDN, they say it has done wonders for them, so just like we all know about MS - we're all different, and what works for some, doesn't work for others. Story of my (MS) life, unfortunately. As LDN isn't licensed in this country, it isn't easy to get. Some GPs will prescribe it, but most won't.
I had to pay for a private prescription and pay for a pharmacy that dispenses it to post it to me. All sounds a bit 'cloak and dagger' but it ain't. It's perfectly legal and you don't know if it is going to help you or not until you try it. The cost is minimal - about 20 quid a month.
I was going to give it a bash for 6 months, but in June, I fell over and broke my arm. I was taken into hospital where they gave me morphine, but I was still in pain, so they gave me some more. After the third dose they had to stop. I should've been as high as a kite, but I was still in a lot of pain. It was about a week later that I realised the LDN (an opiate antagonist, remember?) would've been stopping the morphine from working. I haven't taken it since.
I can't believe I've spent this whole blog talking about LDN? I don't have any news about Gilenya. It seems to be stabilising me(ish), and that is all I am after. I haven't done my core stability, or my leg exercises for a few weeks, so I need to knuckle down and get back into them, as there has been a bit of a dip in my physical well being.
That progression calculator really pissed me off. Made me a bit angry with the world, but I'm over that now, so onwards and upwards. And all that.
I've got a photo of my X-ray, and remember: paracetamol is all had for it.
If you read my blog last week, you wont be surprised to hear that I've had a week of feeling sorry for myself, but I feel much better for it. I've decided to plan my future and I've made a few potentially life changing decisions. Nothing life changing (erm, hang on, you just said...), but I need to be prepared for the worst case scenario, just in case.
I've been reading a few Gilenya blogs this week. This one gets put on the MS-UK website as well as half a dozen others. The one's I read were from people in the States, and they've been on Gilenya for well over a year. A few have been on it for longer. Since it was a stage 3 trial drug, no less. It is quite common to be kept on a trial drug after the trial has finished.
The general consensus seems to be that there hasn't been life changing improvements, just minor ones AND their illness has stabilised. This is what exited me. I have been slowly deteriorating since I was diagnosed 7 years ago. We all want improvements, but I'll take no disease progression right now. It's important I find a drug that halts this seemingly relentless march towards progressive oblivion. Keep me at this level for a couple for a couple of years please?
I have tried other drugs. I was on Rebif for two and a half years. Can I call it by its brand name, or shall I simply call it Interferon? Well, it never done me any good, so I'm not giving Rebif any free bloody advertising. Oh, hang on...?
As my relapses were increasing in pace and severity despite the disease modifying drugs, I was deemed eligible for more aggressive medication. That's when I chose to go on Tysabri (Nataluzimab). I was tested for JC virus before my first infusion, and although it came back positive, I still opted to take the drug.
JC virus can be found in the blood of approximately 50% of the population of those tested. It is a harmless virus, provided it doesn't get into a nervous system of someone where there is little to no immune system. Left untouched, JC virus can mutate and become Progressive multifocal leukoencephalopathu (PML) - Of course I looked that up. I can't even say it, let alone spell it! Where was I? PML. Tysabri works by stopping your immune system from getting into your nervous system and attacking the myelin sheath that protects the nerves. You need to think long and hard about taking Tysabri if you're JC+.
I decided it was worth the risk, and I went on to have 30 monthly infusions before I came off Tysabri at the start of last year. I stopped taking it because my deterioration was picking up speed, I wasn't convinced it was still working and I felt that I needed to take a break from the drug and assess my situation. By the time I had been off Tysabri for three months, my Neuro informed me that in that time it would have completely 'washed' out of my body, so he asked if I would be interested in trying a new medicine that had just been re-licensed. I always keep up to date on research matters (Time to plug the MS Trust website) and I knew the new drug was a tablet and it was called FTY720, or Fingolimod, or Gilenya and this is where I'm at. Fingers crossed.
Happy Friday, all.
I have officially reached the 6 months on Gilenya point. It's gone quick. If asked, I would say it doesn't feel like I've been on it for half that time, but I haven't, so I won't.
I got through February falling over only 3 times *pats self on the back*, and one of the times was when I'd had one or two or six drinks too many. The good thing about that was the alcohol numbed the pain. As it didn't hurt, should I omit it? If I do, it won't be a problem with those that disagree with me because I would've deleted this part of the paragraph and you won't have even known I debated with myself on the subject. If I have left it in, you'll wonder if I'm going insane by arguing with myself. Thinking about it, I would also leave out the one where I had a urinary tract infection. Those little buggars really kick my symptoms off and mess up my legs and because I self catheterise, I am prone to them. I do keep myself clean, but some of the pubs I frequent, get a zero out of ten when it comes to toilet hygiene. I also found out that the antibiotics that I have been taking in a low dose as prophylaxis (look it up) for nearly two years will be having no effect anymore and probably haven't been for the last year. Prophylaxis means prevention, by the way.
I was reading a Multiple Sclerosis blog at the weekend. This blog is done by my consultant and his team. One entry in particular caught my eye. It is a progression calculator of sorts. It is a graph showing the progression rates of others. I compared the length of time I've had this illness to my Expanded Disability Status Scale (EDSS) and I can confirm that my MS has progressed faster than 95% of the people on the scale. I was never in the top five percent in any of my subjects at school, so this is a real accolade here. NOTE TO READER: I hope you can detect the massive sarcasm in this part of the blog?
To continue in the same sarcastic vein, it gives me joy to inform you that in the 7 years since diagnosis, I have deteriorated to EDSS7 and if it continues on this present course, I'll be at the EDSS stage 9 in 2 years time - where I will be bedridden. And to think some people with MS's biggest fear is spending their latter years in a wheelchair. I'll be 40 in 2 years.
None of the above will include the impact new drugs will have on us MSers over the next few years, and Gilenya is a new drug, so lets hope it changes the course that I am on. I really need it to. It's more or less a life or death situation I am in now.
If anyone is interested to see how they are doing in comparison to approximately 28,000 North American people with MS:
I do, however, suggest you DON'T look. I genuinely wished I hadn't. Whatever happened to my old mantra that 'ignorance is bliss'?
My Gilenya turned up last week. As always, it turned up smack bang in the middle of the 12.25 - 14.20 delivery slot. I cannot actually confirm the validity of that statement because I wasn't home when it was actually delivered, but it is ALWAYS delivered on time, so lets just assume it was and move on.
My new car is almost ready. They're putting a hoist in the boot so I can get my scooter out in one piece, rather than constantly assembling and disassembling it every time I use the bloody thing. I'm not complaining though. Rather that than a wheelchair. I hate going anywhere in a wheelchair. People treat you like you're a small child in a pushchair, ignore you and communicate with the person pushing you instead. It makes you want to scream, "I AM PHYSICALLY DISABLED, NOT MENTALLY!" But, hey, that's just society. Society can't help it, so I shouldn't really worry about it.
I am writing this blog on Thursday 28th Feb. That means I took my 176th tablet of Gilenya this morning. That's 88mg of the stuff, at an estimated cost of £7,207.20 to the British taxpayer (me included). Thank you very much.
In case the payers of tax are wondering if you're getting value for money, I can confirm that you are because I am worth every penny!! In all honestly, it is a therapy that has been as smooth a ride as possible. Not a single side effect at all and the benefits of better bowel and bladder control and practically zero fatigue most of the time. Unfortunately, there hasn't been any improvement with my walking - yet, which is a shame because my legs are the part of my body that lets the side down, but you have to stay positive, which is why I said "yet" back there. Also these disease modifying drugs aren't designed to make you better. They're not even designed to stop you getting worse. They are supposed to slow down the rate at which you deteriorate. Maybe I am being greedy by wanting improvements, but I can't help it. You'd be the same.
There are probably one or two of you out there contemplating switching from you current medication to Gilenya. Especially if you're having to regularly self inject. If I can give anyone in this scenario a piece of advice, it would be: If your current medication is keeping you relapse free, stick with it. As annoying as injectable medicine is, (I took Rebif for two and a half years) if it's doing its job, then great, that is what you're aiming for. The grass isn't always greener on the other side. If you are on medication, but still having regular relapses, then you are eligible for Gilenya, ring up your Neurologist and beg them for some. Move to an area where the primary care trust say yes if you have to, but ask. It has been fantastic for me and hopefully is for others too.
Before I start this week's blog, I need to warn you that I am listening to the Dead Kennedys, so I might end up trying to overthrow the government or something whilst I am writing.
Last week I tempted fate about my lack of falls and guess what? Yep, I fell over. I was drunk though, and as much as I don't want it to count, I'm going to include it. That's twice I've hit the deck this month which is good going for me, with only a week to go.
I'm not going to declare that I'll get to March without another stack though, because my legs are really bad at present. I caught a sickness bug. This alone is nothing to be concerned about, but any virus I get seems to exacerbate (did I spell that right?) my MS, and my legs in particular. I was completely paralysed from the waist down and I had to spend a night in hospital with some lovely nurses. You've got to take the positives out of any situation. My glass is half full, you know. Well until my wife reads this and empties the half full glass over my head!
I'll be fine in a day or two. The virus is out of my system now, so my symptoms will be back to a more manageable level in no time. They better had anyway, I'm going to watch West Ham play Spurs on Monday. I don't care how bad my legs are - I am there.
I'm thinking about renaming my blog Pills, Thrills and NO Bellyaches as I haven't had a single side effect in the whole time I've been on it, which is almost 6 months. If I change it, I won't have to worry about a potential plagiarism lawsuit from the Happy Mondays lawyers. That's where I nicked the name from after all.
My Gilenya turned up last week, but I didn't ask the driver Dave W what the W stood for like I said I was going to a few months ago - because I forget! Don't tut at me, I can't help it Don't blame me, blame my lesions. I have got MS, you know.
All jokes aside, I do feel like my cognition has improved a bit of late. That could be the lack of fatigue coming into play again. I don't know, but that would make sense, the less fatigue, the less the cog-fog.
Fatigue might be invisible to those on the outside without MS, but on the inside, it's a cruel symptom that hampers us in so many different ways. I wouldn't wish MS on my worst enemy. What am I saying? Of course I would. ;-)
Have a nice weekend everyone.
Last week, I bored you to the brink of death because I was going on about my driving. Well I'm going to bore you on the subject for a few more minutes.
I get my cars on the Motability scheme. Instead of getting Disability Living Allowance money for mobility, I get a new car every 3 years on a lease hire contract. Because my mobility car was written off, the 3 year contract I was halfway through got terminated and you go through the process of picking a car from scratch.
Since the accident, I've been driving around in a hire car that Motability arranged for me. I believe I have this car until I take delivery of my new car sometime next month. I found out the other week that as I am not officially in possession of a Motability car, I am entitled to the DLA money too! Fantastic, eh? You just take your time adapting the new car Peugeot. No rush.
At the time of writing, I've only had one fall in February. We're almost halfway through, so I'm patting myself on the back here. You're probably thinking I'm tempting fate here, and I suppose I am, but I don't believe in fate and should I hit the deck before I post this blog, I won't think it was fate biting me on the arse. It would've happened regardless of if I had written this paragraph, or not. (Fingers crossed)
You want to know about Gilenya, right? Okay then, I've already said how my bowels have improved so much of late *insert your choice of shit joke here* (pun intended). I empty my bowels pretty much every day now, which also has benefits because you don't have all those toxins festering inside your body for a week, 10 days, or however long it takes for the ol' bowels to move. I am convinced this improvement IS because of the Gilenya. It's my body after all.
Also my bladder is still tip top. The other day, I needed to wee twice in one day! Yeah, I know only 2 times. I spent a couple of hours in a car and I didn't take in any fluid, but I more than made up for it in the evening with Vodka and red bull. Yes, caffeine AND alcohol in the same glass! 2 elements that would normally have me running (if only!) to the toilet the second either entered my bladder.
I do apologise about the odd profanity sneaking into this blog, but I can't help it, it's the MS!
Be well, people.
My last blog came across as mildly melancholic. I do apologise. I suppose I shouldn'tbe listening to Nirvana or Lana Del Ray when I'm writing. Oh well.
Don't worry, MS hasn't managed to get inside my head. Depression is a very common symptom of MS, and that is one battle I fight every day. And every day I win that battle and I'll continue to win that battle every day.
My walking is slowly improving - I'm not thinking about the London Marathon just yet. Maybe next year, but don't hold me to that. This is more than likely because I've got my exercise regime down to a tee. At first they were making me quite rough, but now I'm feeling the benefit. I had a week where I did them, regardless of how bad I was the next day. I spent 3 days where my body was ruined because of the exercising, but I've come through the other end feeling the benefit now.
Also my driving has improved. Yeah, yeah, I know, you're thinking that I'm talking rubbish because I wrote my car off before Christmas. Well let me tell you the accident was the other driver's fault, and if it hadn't been, it wouldn't have been my fault either because I've got MS!
The car(s) that I drive have been adapted. They have the 'push and pull' hand controls fitted, so that when my legs are tired and 'drop foot' kicks in (oh, the irony), I can take them away from the pedals and drive with my hands. I've been driving like this for a few years now and before I was hospitalised in June, I could drive between half a mile to five before I'd start going back and forth using the hand controls as well as the foot pedals. The last month or so, I've been driving to Chelmsford using only the foot pedals. Now that is a 25 mile journey from Southend. Is the Gilenya helping me? I dunno.
The thing is though, as my body is slowly deteriorating, my ability to do things becomes less and less, but some things have improved. My fatigue, my bladder, my bowels and now my ability to control my car with the pedals. I'm wondering if the less the fatigue, the less the drop foot - thus making me to drive the car 'normally' for longer? We all know that fatigue affects us physically so, maybe, just maybe the Gilenya is helping me as well as the exercises.
If I were a scientist, I would stop the exercises and see if it is the medication, or vice-versa if I were a physiotherapist, but I'm neither, so I won't, so you're out of luck. Sorry.
Have a good weekend, people.