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).
Week 40
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.
Speak soon,
Dan
Week 39
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.
Dan
Week 37
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...
Happy Friday,
Dan
Week 36
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.
Happy Friday.
Dan
Week 35
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.
Dan
Week 34
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,
Dan
Week 33
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,
Dan
Week 32
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.
Happy reading,
Dan
Week 31
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.
Dan
Ps,
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.
Week 30
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
Dan
Week 29
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.
Dan
Week 28
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.
Regards,
Dan
Week 27
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.
Dan
Week 26
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:
http://multiple-sclerosis-research.blogspot.co.uk/2013/03/predicting-ms-explained.html?m=1
I do, however, suggest you DON'T look. I genuinely wished I hadn't. Whatever happened to my old mantra that 'ignorance is bliss'?
Dan
Week 25
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.
Keep well,
Dan
Week 24
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.
Dan
Week 23
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.
Dan
Week 22
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.
Dan
