Clinical trial

Everyday living
1

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

2

Hi Margaret,

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.

Tina

x

3

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.

4

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

5

Hi Margret

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

Mark

6

Hi Margret,

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

John