Tysabri Trial For Secondry Progressive.

Everyday living
1

Hello all,several months ago my Neuro told me that my MS had progressed from RRMS to Secondry Progressive as I was not recovering from relapses to how I was before the relapse and to stop taking the Betaferon as it was no longer working.He said unfortunatly there is,at the moment,no drug licenced for the treatment of Secondry Progressive MS but he said there is a drug trial for how Tysabry could could help treat Secondry Progressive MS and would I like to take part.It’s a two year trial but it’s a Double Blind,Placebo Controlled trial and I would not know till the trial finished to weather I was on the drug or the placebo.So I’m trying to work out weather I’m on the drug or placebo by asking people who have RRMS and are on Tysabri what side effect they get staight after the infusion,for the next couple of days and for the rest of the month.Your help would be very much appreciated as I would be dissapointed to find I was on the placebo.Either way I would not stop the trial as it could help us in the fiture.Thankyou,Dave.

2

Hi Dave

I can’t answer your question, but just wanted to say good on you for taking part in the trial, and I hope you get what you need.

Best

3

Hi Dave, I have been on Tysabri for 3 years now. To be honest I really cant tell I have had it, sorry not much help. The only thing I have noticed is that around the 28 day mark I get more tired than usual.I do hope it works for you, I know a couple of people with secondary progressive and they feel abandoned. Best, Peter

4

I have been on Tysabri since September 2011. For at least the first year, I felt completely washed out for the 5 days after the infusion. I don’t think this is true for everyone, however, and has faded away for me. I do feel a bit done in on the day of the infusion but not later in the week.

5

Hi, hope this info helps you decide , I’ve been on tysabri for nearly 3yrs . Still have headache straight after infusion , sometimes into next day it just fades as the day goes on . After a few days my fatigue improves for a bit , on the 3rd week may energy drops. I get a lot of sore throats and colds . Also I don’t sleep we’ll . However , there area lots of positives regarding quality of life . I work , look after my children so I’m grateful . Hope x