Hi there
I'm sorry you are having these problems, I agree that stopping the beta for a couple of weeks is a good idea.
I am on it and have had no side effects apart from headaches for the first couple of weeks which I could easily cope with.
Like Ess says there are always alternatives to try.
I hope you feel better soon.
Mand
Thank you both for your comments. My husband is finally seeing that I am utterly miserable and can't take it anymore. So I am going to stop the medication like you suggested for two weeks or so and see how I do, as I can always go back on it.
ST
Of course...that's exactly what to do. My brain didn't even think about that.
ST, I agree 100% with ess. Of course, stopping the medication for a couple weeks, will tell you whether the medicaion is causing these symptoms. Please let us know what you are going to do. I say, go with Ess.
Heather
There's only one way to find out whether the DMD is the culprit, and that's to stop it. In your shoes that's what I'd do, if only for a couple of weeks. Your disease can't progress much in that short a time. I'd also let my neuro know what I was doing, so that if Betaseron is causing this, I could switch to something else without a big delay. The best choice would be Copaxone, since the interferons have similar chemical composition.
Please keep us posted. We're very concerned about you.
ess
I hate to disagree with the "experts," but I do NOT think this is normal at all. In fact this is the first time I have heard about Betaseron causing these kinds of problems. I say they are no normal.
The one person that may be able to help you since the doctor and the Beta nurse aren't, is your pharmacist. They know about every drug and can tell you whether this is serious, which I think it is. You can then call your doctor and tell him that you would like to switch drugs, since you have having such serious side-effects with this one.
You should not have to suffer like you are suffering. Please, calling all Beta users, have you heard of something like this happening before? ST needs your help and fast.
My many blessings. We're with you...you're not alone.
Heather