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Tysabri or not??

Hi

I’ve been given the option of going on to Tysabri, just got my blood tests back and its come back positive for JCV (or mad cow disease as my husband just said!), anyway I was hoping it would be negative so then I would have no hesitation in starting tysabri. As it is now though I don’t know what to do, do I try tysabri even with the much increased risk of getting PML or do I go for injections and one of the interferons?

Has anyone been on tysabri who was positive for JCV and how did it go? Did it make you feel better/reduce relapses? Anyone on interferons and which ones?

Any advice or nice words to cheer me up would be much appreciated

Catherine xx

Hi Catherine

I have been on Tysabri for a little over a year now (previously on REBIF). I am JC+, but I didnt find that out until my third infusion.

The facts and figures surrounding the JC virus and Tysabri can be daunting - but for me personally the possible positives of it far outweighed them. On REBIF I constantly relapsed and the side effects from the drug for me were just awful. Since starting Ty I have had no relapses at all and also no side effects. The first few infusions I felt quite head achey and tired for a few days afterwards - but nothing major at all. At first there were no major differences in how I felt, but now I feel my walking is better and also the fatuigue is better. They say it wont help anything like that - but I believe it does.

Do you know where you will be treated? I am in Southampton and the nurses there keep a close eye on everyone but more so if you are JC +. All the people in my group are JC+. 90% of the time its the same nurses so they know you well and can easily pick up on anything that may be nasty. We also get annual MRI’s (some hospitals do more frequent ones for the JC+ people) and to be honest I couldnt ask for better care and I also would not give Ty up if you paid me!!

It all comes down to what is best for you. Before I started my nurse told me to make myself aware of the risks if I were JC+ but also not to dwell too much on it.

If you want anymore info from me (I no medical guru - but as a person on Ty and JC+) just PM or on here. whatever.

Good luck xxxxxxxxx

Hello,

JC positive so you are likely to get PML. The risk seems to be changing as more facts are established and more research is done.

Suggest you go to the MS blog at http://multiple-sclerosis-research.blogspot.co.uk. You will see a search bar on the lhs. Enter JC Positive and check things out from there. Happy reading!!

There seems that there will always be a risk. At the moment Tysabri is the way forward. I’m JC +ve and on the ASCEND trial, using Tysabri on people with SPMS. OK its a double blinded random trial so I have no idea what is in my infusion, I think its worth the ris

Patrick

Hi Catherine,

Have a look at this link, where Professor Gavin Giovianni explains PML and the risks in plain english

http://www.slideshare.net/gavingiovannoni/mser-version-pml-update-may-2013

Have a chat with your MS Nurse if you need any further info…

All the best,

M x

Hey Catherine

I have been on Tysabri for almost 4 years now and I haven’t had a relapse since I started it. I was on betaferon and Rebif respectively and wihslt they lessed the severity, they didn’t lessen the relapse rate. I was having 3 relapses a year on average before starting Tysabri.

As for the risk of PML, my argument is that why worry about such a small miniscule risk for the possible benefits it could bring. As far as I am concerned the benefits far outweigh the risks. I am JCV- and if I wasn’t I still wouldn’t be that bothered. Due to the Tysabri I have been able to complete an Access to Health Studies course to try and get on a p/t OT course which I didn’t so I am now studying A Levels at my local 6th form for another try! I also play wheelchair basketball. which would not have been possible if I was one the injectable DMDs.

I wold say go for it as they will monitor you very quickly and if you do relapse they will give you an MRI scan very quickly to make sure that it isn’t PML. So with all this I can put it down to two words: NO BRAINER!! :slight_smile:

Andy

Hi Catherine, I have just had my 4th Tysabri infusion and found out at my 3rd that i was JC+. I posted on 9th May something very similar and got some really helpful replies-have a read to see if that helps you too? I felt MEGA anxious about being JC+ but it is not a 50/50 chance of getting PMl it is 1) awesome benefits of being on Tysabri against 2)“what if” I get PML…it is really hard to keep it in prospective cos reading about PML is super-duper scary-I totally get that! but the risk is 1 in 400-big decision I totally understand that! For me it is only early days(having just had my 4th infusion) but I am seeing a change already, the numbness in my leg has altered which is making me more balanced which means I can walk better, I can even stand un-aided at times…if this improvement continues?..I might be able to go without my stick and walker? The main side effects I have had has been headaches and increased fatigue so both of those very manageable and CONSIDERABLY better than relapsing. if you want any further info feel free to PM me, anytime. SJB x

Hi Catherine, totally understand your predicament! I am JC+ and have just had my 4th infusion. BIG decision and I felt quite anxious and have to admit scared but it is important to keep in prospective the benefits Tysabri can achieve even though the side effects of “POSSIBLE” PML are not trivial. It is more of a “what if” than a 50/50 - the facts are 1in 400. I am pleased to tell you that I am (at this early stage) seeing an improvement because my numbness is altering which is affecting my balance so my walking is improving!! I actually got an independent opinion from a nerologist in USA and he might as well have been in the room when my neuro explained the +and- of Tysabri relating to my relapses…this helped me make the decision to go on T!

Hi Catherine, totally understand your predicament! I am JC+ and have just had my 4th infusion. BIG decision and I felt quite anxious and have to admit scared but it is important to keep in prospective the benefits Tysabri can achieve even though the side effects of “POSSIBLE” PML are not trivial. It is more of a “what if” than a 50/50 - the facts are 1in 400. I am pleased to tell you that I am (at this early stage) seeing an improvement because my numbness is altering which is affecting my balance so my walking is improving!! I actually got an independent opinion from a nerologist in USA and he might as well have been in the room when my neuro explained the +and- of Tysabri relating to my relapses…this helped me make the decision to go on T!

Lots of people seem to see improvements soon after starting Tysabri. I wish my walking had improved (been on it nearly two years) - still could happen I suppose. One of my Tysabri pals started to see improvements, but only after a year on it.