Hi everyone, I have spms and have just been offered to do a clinical trial on tysabri it will be a blind trial but was just wondering if anyone was doing a trial like this or if anyone had any experiences with this drug as I have heard of it being used in highly active rrms ? I’m just waiting on a 12 page letter coming through the door, then I have to go on Thursday to be screened !!! I’d be grateful for any info Margaret x
Just bumping this up for you, as no, I’m not on Tysabri, but I know we have other members here who are. Not sure there’s anyone else on the PPMS trial, but definitely some RRMSers who were prescribed it through the normal channels.
I’ve been on Tysabri for highly active RRMS since Sept 2011. Having the drug is OK for me. My blood pressure went very low the first time I had it but after that I made sure I drank plenty of water while having the infusion and it has always been fine. I am a bit weaker than normal for around 3 days after the infusion, but then OK. However, although I am having less relapses than I was (down to one or none from about three a year) I have carried on deteriorating. I think I may just be unlucky - the average slow down in rate of deterioration is two thirds but I’ve met people whose deterioration has completely stopped. They’re at the top end, 100% reduction in deterioration and I’m at the bottom, 30% reduction or less.
Hi Margaret, I was interested to hear that you have been offered a Tysabri trial with spms. My neuro told me in early January that my ms is now spms and has taken me off Avonex injections that I had been on for six years. I can understand this as I don’t think it was helping me much anyway but he told me that there was nothing else that he could give me now. Anne
I have been on the trial for almost 24 weeks now cant say that I have seen any difference but I could be on the placebo drug for all I know
I find that it can be a bit boring at times so i now take an ipad with me so I can play a few games whilst the infusion is going on
when I do the walking tests that can get tiring for me
sorry not much of a help but hope you get on ok with it
I have been on the trial for about 36 weeks now and like Mark i have not seen any differance so far, In fact i have noticed steady progression.
It is a bit of a commitment as it’s every 4 weeks and you tend to be there for at least 4-5 hours but who knows it may turn out to help.
I have my infusions at the QE in Birmingham
Any questions send me a message and i will be happy to help if i can