Drug Trials Updates?

[Portia]

So how is everyone in the drug trials doing? I am six months into the extension phase of the ACT trial and doing fine. The minor breathing issues that began in the first phase are still with me and now I have a basic inhaler to use if I get wheezy. I've only used it a few times in the past couple of months. My most recent study trip was a couple of weeks ago, and I don't go back until end of August. I notice that if I forget to take my pill early in the morning I feel tired and run down by noon.

I'd love to hear how people are doing in this trial, the ONO trial, and others. The main post on the ONO trial has been archived.

[Cherrymom]

Ono 4641

Well... I'm 4 months into the extension and unfortunately am in a relapse. I love the convenience of the oral drug and don't see going back to a daily needle as any better option. But may not have a choice if things continue, which stinks since prior to the relapse I was back to the gym three times a week and feeling great

[MacFan78]

ONO- I have been on this drug for a year now, I have only had one relapse (last October) First experience with O.N. went totally blind in my right eye, I was given IV steroids for 3 days, total time blind was only 4 days, I haven't had any side affects the seem to affect me, The nurse tells me my heart rate has dropped a little but nothing major. I was on Betaseron before the trial but it gave me depression, that has gone away and loving life right now! Altho now it is summer the heat is still getting to me, I am always using my vest witch helps allot. Having a pill a day is so much better then the needle witch I always had problems with.

[Portia]

Cherry, sorry to hear you are in relapse. I hope a remission is just around the corner for you.

MacFan, It's nice that you are not having negative side effects. The heat is a pain; it makes my wheezing even worse and means I cannot exercise outside.

I truly don't know if the experimental drug is helping me. I have not had any relapses that I am aware of. I say 'aware of' because I have never had the really bad symptoms that many people get. Sometimes my muscle twitches are much worse than others, and my legs continue to get weaker. How do I know if I would be better on a different med? I might be worse on something else. My MRIs will tell a story, I suppose, over the course of the study.