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8 years on tysabri - should I stop?

PostPosted: Fri Feb 24, 2017 8:54 pm
by MSguySince2007
Hey all - long time lurker' first time poster.

I was diagnosed with MS in 2007 after having my first attack when I was in my 20's. Mostly balance and visual disturbance led to MRI that showed 100+ brain lesions.

Started with Avonex and within 3-4 months had another attack that had one side of my body numb. Took steroids, felt back to normal and then started Tysabri. Havent had any attacks since, dont feel any symptoms or burden from the disease anymore and Im now in my mid 30's.

Considering stopping Tysabri, and even starting to questions my MS diagnosis all together. I know tysabri rebound effect we all hear about sounds like a very real thing., but I havent felt any disease activity in almost a decade.

My question is; frankly.... what do you think? Should I stop

Re: 8 years on tysabri - should I stop?

PostPosted: Tue Feb 28, 2017 4:45 am
by Pipilongstocking
Hi,
Welcome to the forum, this is only my personal opinion....it is fantastic you have had no disease activity, but my personal experience going off tysabri due to being JC positive was that it did make my immune system angry and I had a relapse with new lesions in a new place, my cervical spine, I got over it but it was not pleasant at the time, like you, I had no disease activity whilst on it. I also swapped to Tecfidera one month after stopping it and follow OMS diet. That was 2yrs ago. I only notice a slight weakness in my left leg with exertion, but it is really annoying as I did have fantastic endurance. Maybe you should ask your neurologist if you could do Tysabri every 8 weeks, and a new drug Ocelizumab will be available in Australia next February (looks like it will be approved your Neuro will know) and that is given every 6 months and doesn't seem to have the same risk profile as Tysabri re PML. It may also be safer to come off that one if that was your plan. Having Tysabri 8 weekly may suit your lifestyle also. This is only a thought....maybe worth a discussion with your Neuro. Keep on gathering information and keep yourself informed.
Wishing you good health and happiness
:)

Re: 8 years on tysabri - should I stop?

PostPosted: Tue Feb 28, 2017 8:16 am
by Pipilongstocking
Sorry, correct spelling of new med is Ocrelizumab...
Cheers
:)

Re: 8 years on tysabri - should I stop?

PostPosted: Tue Feb 28, 2017 8:24 am
by fromIT
Certainly, the best should be talking to your neurologist, but since we're here to share opinions and experiences, this is my opinion: if I were you I would stop Tysabri only if I had significant side effects. I am so enthusiastic to see that your disease has slown down! Great!

Re: 8 years on tysabri - should I stop?

PostPosted: Wed Mar 01, 2017 3:08 pm
by PAPAGEO
Hi there. Am on it for close to 4 years and since my JCV tests are negative I ll stick to it. I have the infusion every 6 weeks now as my condition allows it and the nearest hospital can only be accessed by air, plus there are only two flights a week.... This means time away from work... Side effects are minimal.
I keep my fingers crossed. I am 51 and relapse free since I went on Tysabri.

Re: 8 years on tysabri - should I stop?

PostPosted: Thu Mar 02, 2017 8:59 pm
by MSguySince2007
I appreciate everyones feedback.

Yes, I am already on 8week dosing schedule. Havent had any disease activity since starting Tysabri so I am immensely thankful for that. Maybe my imagination gets the better of me but with almost a decade of no disease activity, makes me wonder if I had MS in the first place.

But having said that... my first attack showed brain lesions on MRI and 2nd attack few months later showed spinal cord lesions. My understanding is that that spinal cord lesions are nearly the only dead give away for MS.

Ill have to talk with my neuro. Thanks again for all your feedback

Re: 8 years on tysabri - should I stop?

PostPosted: Fri Mar 03, 2017 2:19 am
by Pipilongstocking
Yes I agree have a chat to your Neuro, my advice would be not to drop the Tysabri 'cold turkey', have a plan B in place, personally I am waiting for Ocrelizumab to be approved... Good luck with what ever you decide, at the end of the day it's your body and your decision
Best wishes
:)

Re: 8 years on tysabri - should I stop?

PostPosted: Fri Mar 03, 2017 9:18 am
by fromIT
Great... let us know :!:

Re: 8 years on tysabri - should I stop?

PostPosted: Wed Nov 29, 2017 10:51 am
by Michael555
Hi msguysince2007. I'm in a similar position to yourself. I'm just wondering what did you end up doing in the end?

I was diagnosed October 2007 and have been on Tysabri since June 2008 every 4 weeks 300ml, I've also tested positive for JC virus a year ago and getting nervous playing Russian roulette with PML. I've adopted the OMS lifestyle best I can for past two months and feeling a bit better for it. Any thoughts or feedback welcome. Thanks :-)

Re: 8 years on tysabri - should I stop?

PostPosted: Fri Jan 11, 2019 5:28 pm
by PAPAGEO
Hi. I have been on Tysabri for 5 years after failing interferons. I addressed this same issue with Biogen who referred me to my neurologist (as if it was her who invented Tysabri!) who, in her turn suggested that for as long as I am JCV negative there is no reason to stop. There is a study under way to see if Tysabri could be administered every 6 weeks instead of 4 thus reducing the risk of PML, something I have already done a while ago on my own as the closest hospital is 30 min away by air and there are only 2 flights a week from where I live. Alternatively there are other treatments such as Lemtrada and the new Ocrelizumab but why quit Tysabri when it works?!!! Bottom line hang on to it for as long as you can. PG 53 y old 6 years ms 5y on Tysabri and 5y relapse free