Nicki's Tysabri Diary
| Date of birth:
| Main symptoms:
Optic neuritis, Bladder, Mobility, Fatigue, Dizziness, Motor fatigue, Dexterity, Weakness, Heat intolerance..
| Type of MS:
| Tried medications:
| Current medications:
| Country of residence:
Okay to be contacted?:
Yes, via MS-UK
I am 41, have a husband and 3 young kids, a dog a cat and have a busy hectic life. I also have MS. It is now nearly 16 years since my first symptom of Optic Neuritus, which reappeared twice again over the following 5 years, I was never diagnosed, but as MS runs in my family, I knew I had it also!
I had some lovely years of nothing much and certainly no big relapse. I tried hard to keep busy and reasonably fit. I really didn't spend much time dwelling on it.
Then 4 years ago my mum (who had MS) died. Possibly due to stress, possibly because i had recently had a baby, who knows...but I relapsed. After a year of tests, my 1st MRI was inconclusive, lumber puncture clear, test for Devics disease -fortunately clear, then another MRI 1 year later with more lesions and field vision test to confirm ON, I was finally diagnosed in 2010 and told my prognosis was reasonably good, considering my history so far. I was quite optimistic and felt pretty good. My symptoms were mostly sensory and didn't affect me much. I continued swimming, jogging, aerobics, dog walking and running around after 3 young kids!
Then, a terrible year last year of 4 relapses ( 1 trigeminal neuralgia, 1 sensory, and 2 of which affected my walking, bladder, fatigue and more), I had tried Rebif which felt like it made things worse, i felt rough all the time, relapsed again and felt a bit depressed. So changed to and currently using Copaxone which has been fine, though I did have a long and bad relapse about the time I started it. I've just had an MRI and it concludes (unsurprisingly) I'm now becoming more active, and my Neuro has suggested Tysabri.... Well now its time to get serious. I am bombarded with decisions to make and all the worries that go with them.
So I thought I would record them here...
It's now been a year since I started Tysabri. It seems to have flown by. All is good, no miracles but I haven't had a relapse and I am no worse. My MRI was good - no significant change and no sign of PML.
For most of the past year the Tysabri made me worse for the week after infusion, but this time it actually made me feel better. I was struggling before infusion, but felt much better after it. I am only guessing here, but I really do think that as such a powerful drug, it was knocking me about, and it has taken me a year to get used to it. My last infusion was only two weeks ago but I'm already looking forward to the next one!
I've noticed the motor fatigue getting worse. I really have no stamina at all and get very wobbly quickly and legs so weak they are going to give way on me. I can manage things well in small bursts and I'm fine again after rest. It's very frustrating because I have to slow everything down. I've also noticed that I struggle with my ability to concentrate and do more than one thing at a time, my kids are always picking me up on saying random wrong words in conversations, I don't even notice I've done it. I say the right thing in my head but it comes out wrong!
Since new year I started Gabapentin for sensory problem, the burning in my feet and constant "buzzing" and numb sensations are so annoying that I can never switch off to MS, even when I'm just watching TV or in bed. I'm now on 1800mg a day and the only improvement I've noticed is the crawling itch that i can't scratch ( the best way to describe it) has disappeared -this happened at a low dose. I do wonder if this drug is actually making the weakness worse. I'm going to stick at it a bit longer, but I'm not sure I'll continue with it. I'm seeing the Neuro in a couple of weeks, so will see what they say.
I've now had my 9th infusion. All is well. No relapse this year which is great news. This time last year I was at my lowest, I was struggling to walk from my front door to my car, falling all the time, and fatigue which left me feeling pretty useless. I was in a long relapse and did improve on steroids, but it was a relentless year on a downward spiral.
When I look back, I can see the progress I've made. I still have days worse than others and occasionally some really good days. My good and bad days centre very much around my infusion. For quite a few months now I've noticed my symptoms worsen for a week after infusion, I've sort of got used to this. But this time I was getting pretty bad the week before infusion and then got even worse after. I actually thought I may be relapsing ( I've relapsed in November for the past 2 years). My walking, fatigue, balance, coordination and strength in my arms were noticeably worse. Then 8 days after the infusion (Wednesday) I was like a different person, in fact I was and still am ( now Friday) the best I've been for months. I still get motor fatigue, but seem to be able to go for longer before I reach that point!
I cannot figure any of it out really but accept and appreciate the good days and hope I get more of them. On the bad days I just try and do the basics/essentials ( sort kids out) and forget the rest (housework)!!
I'm continuing to have a really poor week after infusion, which gets better and usually pretty good before infusion, this seemed to be opposite to many people, who seem to crave their next infusion, whereas I dread it. But after asking others, I am not the only one, there are a few others who seem to suffer in the same way, which is a bit more reassuring.
I started with my exercises. All was going well with swimming- i was managing 1K, which i would struggle to walk even on a good day without getting very wobbly. I do find getting dressed afterwards quite hard work due to motor fatigue, but that soon subsides after a bit of rest. Will get back into it once kids back at school!
School holidays are really hard work trying to keep 3 kids occupied all the time. Lots of arguments and fights, means we are all better off when out of the house, even if it is just the park. At least the weather has been better this year. Less than 2 weeks to go, I'm looking forward to some peace and quiet, getting the house back into some sort of order and back into some exercise.
I have just realised that I didn't update last month, I didn't really have much to say. Infusions are fine, and I feel ok afterwards, though I am starting to notice that the first week after infusion I am more wobbly and weak than normal. The middle two weeks are the best for me, though this month I seem worse than usual. Coordination poor, clumsy, dexterity weak. This is mostly in my hands but is also affecting legs. My legs and feet are more numb than usual which isn't helping with walking. I did have to laugh at my attempt to run to get the washing off the line when it rained earlier - I couldn't coordinate my legs to move in any sort of running fashion, it was like something totally alien to me, a very weird feeling.
But I am better than I was during the last 7 months of 2012 and for that I am grateful. Im looking to start some gentle suitable exercise. My MS nurse suggested Wii Fit in the comfort and safety of my own home which is a great idea. Swimming is a fab exercise for MS and I used to swim before, so will get back into that too. Can't start this week as the pool has shut it due to school exams... I know I'm making excuses already but if I write it here, then hopefully it will spur me on!! I'll update you next month!
My husband is disappointed that Tysabri has not been a miracle cure (he truly thought it would make things better) but it is still early days, and no big relapse which is great. Lots of people tell me I look a lot better. I'm still able to walk for short distances, I get motor fatigue from physical exertion (hanging washing on the line, walking kids to school, changing bed sheets, vacuuming etc..) but survive well as long as I get chance to rest between tasks. It's a great excuse to stick the kettle on!!
This week I had my second infusion, and it was all fine. They didn't use plasters this time as it seemed to cause a dermatitis rash last time. They also fed the Tysabri to me a bit slower- took about 1 hour 20 mins, to try and help stop the mild headache I got last time and it worked well. No headache and no itchy rash. I feel fine from taking the tysabri. I noticed that for 2 days after feeling a little bit tired and clumsy so drank caffeine and ate loads of sugary food!! (not sure this is the best way to deal with it?)
I've just got back from a full on holiday to Disney. I had a great time so did the kids. The weather was hot but I didn't suffer with the heat as much as I thought I would. I went kitted out with cooling wraps, cooling hats, cooling towels but I really didn't need them. I was thrilled and amazed because last year- even with the very poor summer we had, I struggled!! I did struggle a bit more with the heat on the humid days, so maybe that is the key to the problem more than the heat itself. I wonder if anyone else finds this?? I hired a wheelchair out there because there is a lot of walking and queuing. The first week i felt great and often just used it as a walking aid and pushed it around. By the 2nd week I needed it to sit in, I was starting to wobble. But it was a great holiday both for the kids and for me, I've never used a wheelchair before ( though perhaps I should). It was also a great resting place for my 4 year old. Disney was definitely accommodating, and I didn't feel as self conscious as I thought I would.
Now back to reality. My husband is going away with work for 3 weeks this weekend. Im not looking forward to it as all 3 of my last big relapses have happened whilst he has been away. He has never seen me at my very worst!! I don't think I am more stressed when he is away but it seems more than just a coincidence. So I'm going to try to be relaxed and chilled. Focus only on sorting the kids busy schedules, use as much help as possible from friends and family, not worry about housework and eat lots of ready meals!!!!!
Well I had my first infusion 2 days ago, it was very uneventful. Apart from feeling a little wobbly in the afternoon (which was just like MS on a not so good day) that quickly passed and I have (touch wood) felt absolutely fine. No side effects, the worst thing for me was irritation around the area the cannula went in, think it may have been from the plaster! I was geared up for a rubbish next day, and I am really happy to say there was nothing, possibly a very very mild headache, but I think it was more to do with other stuff going on at the time.
The infusion itself took about an hour, I stayed in for another 45 mins, and that was it! The nurses were lovely, it certainly won't be something I dread having to do.
Symptom wise a little early to tell but nothing is worse and if anything stiffness is better, though that fluctuated a bit anyway, particularly with the weather so a bit hard to tell. I'm off on holiday next week to a warmer climate so it will be interesting to see how I get on, it's been a long time since I felt too hot!!
I would like to write more, but happy to say that I have very little to report. Hope it continues!!! Good luck to all of you about to start treatment.
After much debate I decided to go with Tysabri. I was advised that later in the year Gilenya will be available and I could wait for that if I wanted, so spent alot of time researching both options. Of course there were negatives and positives to both, but decided that the possible eye problems, and heart problems were too much of a risk. I was told years ago when I first got optic neuritis that I had a mild heart murmur, though it has never caused any problems for me, I also get poor vision with heat intolerance, which I hate and so my sight is something I don't want to risk.
Of course Tysabri and pml risk is also very frightening. You can't really win either way, but you would be closely monitored on both medications. However the many stories I've read of some great relief of symptoms and low rate and reduced impact of relapses was of course very appealing.
I have 3 young active kids that I still want to do so much more with and be able to keep up with their busy little lives that I decided to give Tysabri a try. I've always got fingolomod to fall back on later or if this doesn't work out for me, and you never know what may be available in a few years time, this may just give me the slowing of progression that is needed.
So I went to have bloods and JCV test done on Friday, and got my first infusion booked for 26th March.
So I'm coming off Copaxone. I have not minded it as drug at all. I even find self injecting everyday a doddle, no really bad side effects (apart from once last week when I must have injected too deep into arm muscle and it was extremely painful - but that was just a one off), it has been easy. Unfortunately for me it seems I started it too late.
So now onwards and hopefully upwards with Tysabri.