I had an appointment with my neurologist and nurse on Tuesday to get my MRI results. I was diagnosed 2 years ago and have had 3 scans. They have all shown improvement with some lesions but there has always been new ones so my MS is relatively active. I have had 3-4 relapses since my diagnosis, my neurologist said that is a fairly good indicator the disease will progress rapidly as time goes on therefore he is eager for me to start a treatment. I have already been on copaxone last year for a few months however my skin did not tolerate it, I did persist with it, rotating my injection sites, using a cold pack etc to no avail. I am aware there are other injections but due to my history of depression, my neurologist was not willing to try this. However I am eligible for Tysabri, I have been informed of the risk that comes with it which is why I am eager to see what other people’s experiences of it and advice following their experience with the drug. I do not carry the JC virus, I tested negative but that does not mean I cannot contract it. I agreed to try Tysabri but I am having so many doubts about it, I keep imagining I will be that 1/1000 that will develop PML. I am only 21 and feel I am taking a big risk with my future or am I just overreacting? I have also been quite aggresive since I was told on Tuesday, I am normally a calm and considerate person but if I hear anyone complaining about anything trivial, it just makes me so angry because I am dealing with something so serious. (I realise this is very selfish of me). Is this a normal reaction? Or am I over reacting? Any advice or hints or anything really would be great.
I have been on Tysabri a year now and I wish I’d switched sooner! I was petrified before starting but it looks so much worse on paper. I am lucky that I am currently negative for the JC virus so the possiblity of me getting PML is virtually zilch! To get PML you need to be positive for JCV…so the reason why they say there’s still a chance of developing PML it’s because a) the test can produce a false negative result in a very minute group of people or B) you catch the virus while on it! The longer you are on it the higher your risk although I belong to a facebook group (UK Tysabri users) and there are people on there who have been on it for about 3 years. At present NO-ONE in England has developed PML as a result of being on Tysabri. They are also extremely vigilant. I, like you, couldn’t tolerate Copaxone (stuck it out for 3 months…most painful thing ever!) Have also been on Rebif & Avonex. I also have terrible depression…take happy pills & mood stabilisers…possibly worsened by the beta interferons but the neuro wasn’t bothered. I get very little side effects from tysabri…just feel knackered for a few hours after my infusion.
I would say go for it…it’s the best thing I have ever done…I’ve been relapse free for a year now!
HiI Jennifer I am waiting for a jc test as I have been diagnosed with quite aggressive ms. The acronym for it will do well on countdown. I am looking at tysabri irrespective of my test result, but I cannot have until test done. I have had 2relapses in 5months and they have noticed leis ions on my brain stem. Good luck and I hope Andreas ino helps. Also here are posts on the same subject, it appears to concern a lot of people. Mike
I tried it (have been on it for nearly 18 months) and it has not worked for me but I would still try it if I could rewind time - it is the best option for aggressive RRMS. If you are JC neg then most of the worry is taken away for you. I know it is possible to dev PML but the risk is negligible and really not worth worrying about. You are young and you want to minimise the impact MS has on you - I would say try Tysabri as it is your best shot. The infusions are a doddle, you will not feel any ill effects (I feel tired that’s all).
I’m having my 4th infusion tomorrow. It got to the stage when the benefits far outweighed any risks. I’m JC negative also. I’m still waiting for it to make a major difference for me, I still get the all encompasing fatigue, after about 2 weeks the benefits start to wear off, if anything I think my legs are worse in those 2 weeks than they were in the time before, or perhaps its more noticeable as they are better some of the time. I’ve tried all the alternatives but many years ago. Avonex sent me quite doolally (severe anxiety), copaxone improved me, but the skin reactions were horrid and after 18 months I got a sever anaphylactic type reaction a couple of times a week. I then managed with steroids during relapses for about 5 years but thats left me with weakened bones, so Tysabri really is my last ditch attempt. I’m still hoping for miracles. But I think things are moving in the right direction.
It is so hard to compare risks when they are apples and pears. In my case, I was faced with a choice between the clear and present risks of my highly active MS continuing to take lumps out of me versus some small theoretical risk of contracting a very serious brain disease. Very big risk versus very small risk, in other words. I did think it all through very carefully, but it really was not that hard a decision to make for me. I have been on Ty for over a year now and am enjoying the peace of no relapses. I don’t know my JC status yet. If I had known, and it was negative, the decision would have been even easier.
Personally, I think we are a bit inclined to give too much weight to risks that we feel are within our control (i.e. Ty or not Ty) and give too little to the bloody great risks that we have no control over whatsoever (like the predations of highly active MS.) As if it would somehow be ‘our fault’ if we chose Ty and the worst happened! A moment’s thought tells us that this is nonsense - it is worth having that conversation with yourself, I think. All we can do is deal as well as we can with the rough hand we’ve been dealt. None of this is our fault - that’s the thing to remember here. That’s the line I like to take. I just want to do my best with this situation, and it seems clear that this means Tysabri.
You are so young to be having to deal with this stuff. It sucks, it really does. All the more reason (I would suggest) to do everything you can to calm down your MS so you can get on with your life.
