Forum

Tysabri - should i stay on it?

Everyday living
#1

Hi Hope everyone 'doing ok'.

Would appreciate peoples opinion....

I have been on Tysabri for a year now and understood the risks of PML. I have now shown posotive for the JCvirus and although I thought it through thoroughly before starting the treatment 12months ago and said the result wouldn't make any difference to my choice as the benefits outweigh the negatives, somewhere at the back of my mind I am now starting to think about the risk more.

I am wondering if I should continue or stop treatment, particularly as the risk of PML increases the longer that you are on it (advised 2yrs+). But do I want to risk relapsing as bad as I have been before beibg onTysabri? I always say quality of life not quantity, but having the reality that you could be risking your mortality is making me think twice????

I know the only person that can make the decision is myself, but would like to hear from others on the subject. Also, do any of you know of anyone that developed PML?

Thank you for reading - Equus

#2

I can't possibly advise, but this chart clarifies the situation very clearly.

http://multiple-sclerosis-research.blogspot.co.uk/2012/07/natalizumab-associated-pml-risk-june.html

#3

I feel for you, and my thoughts (such as they are) can be dismissed as complete bollocks, because I am not in your situation, and, as you know, unless you have been there, you have no idea.

For what it's worth, I think we tend to give too much weight to risks that we believe are avoidable (in terms of our scope to take avoiding action), relative to risks that we believe are unavoidable.  In this context, we regard as avoidable the risk of PML (no one is forcing us to take Tysabri after all) but we tend to regard as unavoidable the risks of MS continuing to take permanent and damaging lumps out of us, even though we do have some scope to do something about this (i.e. take Tysabri!)

Deep down, I think, there is a temptation to think that getting PML would be our 'fault' in some way, because we have chosen to accept a certain (small) level of risk and if it all turns to shit we'll look stupid and people will blame us for having chosen the wrong thing. No one wants to be the moron who took the stupid decision, that's human nature.  But that thinking is surely nonsense.  It is meaningless to regard being (or staying) on Tysabri is a 'choice' in the same way as deciding to go blonde, or deciding to elope with the next-door-neighbour is a choice.  We have highly active relapsing remitting MS and Tysabri is the treatment our neuros are recommending to us.  What sort of a bloody choice is that!?

What I am trying to say is, whatever you decide to do, you might like to try to examine how you weigh up the rival risks you face (given that there is no risk-free option available,) and try to take out of the equation any notion of blame on your part, either blame for accepting the risks of Tysabri, or for declining to accept that risk.

None of this is your fault.  Whatever you choose will not be your fault.  

Alison

x

#4

I have reached the 18 month mark.  I refused the test as the result would make no difference to me - I still hold to that view had things stayed the way they were.  However I had my arm twisted as I started exhibiting more MS symptoms and was prgoressively deteriorating - the doc said management of my condition would be a lot easier if they knew whether to count PML amongst the issues they were assessing and I could see his point.  I was lucky to test negative.  Although lucky that PML was then an even more remote possibility, this meant they changed my diagnosis to SPMS and as a result I am about to stop Tysabri.

I think I still hold to the view I would have lived with the risk of PML - and I beleive it is still small even with a positive test - if I could have stayed relapse free and disabiity free.  I don't know which centre you are having treatment at but I know that they monitor me  closely where I am.

I suppose it is easy for me to say I would have continued given (a) I am stopping soon and (b) I tested negative.  Only you can take this decision and I know what you mean about the two year mark making a difference.  I guess there might be options - I haven't had this conversation with a consultant but is a break and restart a possibility? or less frequent infusions?

there must be others on here who are on Tysabri, tested positive and are on it more than two years - their views and thoughts may be more helpful.  For what it is worth, if I had still been RRMS, it had worked for me etc, I think I might have stayed on it after a chat with the consultant.  However I acknowledge that is only hyperthetical.  Good luck with you decision.

#5

I just weighted up the way Tysabri has worked for me I refused the JCV blood test.

I didn't want to know Tysabri as got me out of a wheelchair and has giving me my life back before Tysabri I was relapsing every 4 or 5 weeks and I was getting more disabled with every relapse It got to the stage where I only had the use of my upper left side. but If been relapse free since August 2008 they did to the JCV blood test a few months I had there word I could stay on Tysabri no matter what the results I told them I didn't want to know the results but later I found out I was negative but that can change over night thats why I didn't see the point in the test.

I'm walking now and have all the use of my body back and I'll be going for my 50th infusion next week I think it was my 46th infusion before I know if I was JC positive or negative.

 

#6

Hi it's me again.

I just wanted to say THANK YOU ALL SO VERY MUCH  for your replies.

I found them all very sincere and helpul!

Its good to know that this site is here on a 'good' day, but I find it a 'god send' when I need to express my concerns. I can easily talk to my husband and he is very supportive, but I also like to hear from those of you who actually have MS.

I have stopped having a 'wobble' and have decided to stick to my original decision and stay on the Tysabri happyflower.

Thank you all again - Equus