Hi everybody. I have MS from13yrs ago. from two yrs ago I started to take intaferon but from last week my Dr wants to give
me Tysaberi And im really panic because of the side effect. Please tell me How did you found tysaberi?
Thanks
sahar
I had the blood test (offered in Coventry but not everywhere, I think) and am presently negative for the jc virus. Could change in the future but presently have only a tiny chance of bad side effects. Process of having the drug has been fine, except the very first time when I didn’t drink much and my blood pressure dropped right down. Unfortunately, I’m still deteriorating, probably because nerves are dying from damage from attacks before I started on Tysabri. Am hoping this will stop soon - definitely has slowed down the number of attacks in the 18 months I have been on it. Has been described to me as the 'Rolls Royce of MS drugs". I feel lucky to have been put on it.
Hi
I’ve been on Tysabri for about 3 years now. Apparently the risks increase after 2 years so when it got to 2 years for me I was asked if I wanted to carry on. I tested positive for the JC virus (if you’re negative for it then I think that means you won’t get PML, however most of the general population have got the JC virus), but I decided to carry on. I used to have a lot of relapses, however I’ve hardly had a thing since I’ve been on it, so I thought the benefits are worth it at the moment. I also prefer it to the interferons as I don’t have any other side effects (when I was on Rebif I’d always feel rough the day after an injection). They’re very good at monitoring for PML at my hospital so I feel in pretty safe hands.
As far as I was aware the risks of getting PML are higher if you’re on another immuno-suppressant treatment, which you won’t be. However, it is still a risky drug to have compared to the others. Many people decide it’s not worth taking the plunge, so it’s your decision to make.
Hope you come to a decision you feel peaceful about.
Dan
Hi Sahar
It is a big decision wether to take it or not. It took me a long time to give it a try. I had the blood test done and tested positiv for the JC virus. I was very disapointed but after a lot of thinking I decided to take Tysabri. I will start next month.
Try to get as much information about it and talk to your neuro or ms nurse
good luck
Ursie x
Hi Sahar
I’m on Tysabri 4 years past last August I went from relapsing every 4 or 5 weeks to being relapse free since starting Tysabri in August 2008 there was no blood test for the JC virus when I started Tysabri I did get tested in April last year and there again last month I was negative both times and even if I was positive I wouldn’t stop taking Tysabri I’ve a better life now then I ever had the benefits for me are will worth the risk I’d no life before Tysabri I’d very aggressive relapse remitten MS I ended up in a wheelchair no use or feeling in my right side and very little in my left but now I’m up walking about and living life to the full.
It didn’t happen over night it was 3 months before I could get out of my wheelchair and walk with a crutch but after 7 I didn’t even need that It was after the second year things really took off.
Mark
Hi Sahar My neuro has just told me he wants me on tysabri. I was diagnosed in march last year…I’ve had 3 relapses in a year, two of which were major…so I had my JCV test last week just waiting for the results. I had loads of info on the day and was sent home with books and DVD’s…I’m pretty much decided that I’m going to give tysabri ago regardless. The positives out way the negatives for me…80% improvement on my relapse rate sounds good for starters. Ask for some more information getting the facts certainly helped me. Good luck with your decision. Libby 