Tysabri Trial.

Hi all,about six months ago my neuro told me my MS had progressed to Secondry Progressive and to stop injecting the Betaferon.There’s no drug to stop the progression of Secondry Progressive but there is a drug trial to see if Tysabri has any benifits,effects so four months ago I started the trial but it’s a placebo controlled trial so it’ll be three years before I know weather I’ve been on the drug or not.So what I want to know from people on Tysabri is how they feel immediatly after the infusion,how they feel in the weeks after and the week before the next one and if their ms symptoms have changed and how they’ve changed.It’s just that I’m tryin to figure out weather I’m on it or not.I wouldn’t stop the trial either way but it would be nice to know.Thanks Dave.

Hi bigdave. I’ve had 10 infusions of tysabri to date. I personally haven’t felt any difference before or after the infusions but alot of people do. i was diagnosed with r&r ms last year and started tysabri last november. i have been told though that it can take years till you see benefits.

Hi bigdave. I was diagnosed with r&r ms last year and started taking tysabri last november. I haven’t felt any difference either before or after the infusions. My doctor told me that its main job is to stop or slow down the progression and i’m pretty much the same as when i started it although the hot weather we’ve had hasn’t helped at all. Other people seem to have improvements alot sooner though and i also got told that it an take a few years till you see a differece.

Dave, I have been on Tysabri for over 3 years and have RR MS. I have never had a reaction after an infusion and I carried on deteriorating for about 6 months before I plateaued out. The only thing I noticed was towards the end of the 28 day cycle I felt a bit more tired. I hope it works for you if you are on it!. Peter

I was on Tysabri for 18months as a last ditch attempt to see if it did anything…my Neurologist was already sure I had progressed to SPMS well before he put me onto it, he just didn’t tell me. I am afraid to say the tysabri did nothing positive for me I felt I had slightly more energy at the end of the 28 days and worse a few days after my infusion. There were another couple of people who tried Tysabri at the same time as me who were both later told they were actually ppms and it hadn’t helped them either…It was worth a try, it may work for some, but I have had MS for over 25 years so I am not surprised it didn’t really help.