Quote:
Originally Posted by Starznight
How much can an ms patient debate with their doctor on treatment medication? I checked out the national ms foundation's ten approved medications, and I have to say two or three of them there's simply no debate necessary. I'm not taking them thank you very much.
And as I am still a dedicated member of the amoxicillin club for infection treatment, I would prefer an older treatment that has built up a history. For my first choice it would be Coxapone. I'm not particularly concerned about allergic reactions even ones that may develop with continued exposure. Give me an epi-pin with it if you must, I know the signs of an allergic reaction. But some of the newer ones I simply don't trust yet.
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But how much can one debate with their neuro over the medication? Especially when the effectiveness, old or new, is unknown. Does that open it up for more personal choice? Or remove the choice and the neuro simply picks the one they like?
... So how can I enter a debate with the neuro? And should I even try?
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As for how much debating you can do with the neuro about MS medicines, I'd say it depends on the neuro. In my experience most neuros (I've had 3 or 4 over many years--#4 shouldn't really count because I saw him only twice and he was laughably bad) like to keep conversation to a minimum and seem like pretty busy people. I tried to find out about the MS meds by going online to the Websites for the different drugs--and reading MS message boards in a big way. If I had questions about a drug, I called that company's toll-free number and asked.
They're more than willing to deal with your questions. They have a lot at stake here. An MS patient on an MS drug might be on that drug for life.
I was on Copaxone for nearly 3 years and was also concerned about reactions. There are the site reactions, which many people have. Those are usually bearable and there are ways of preventing or easing them.
But there's also the "IPIR" (immediate post-injection reaction). I've never had one of them but was concerned because I live alone and understand that some people have had to go to an ER with this reaction, even though the Copaxone literature tells you that the reaction normally lasts only less than half an hour and tells you what to do to get through it on your own.
It's not an allergic reaction. According to Shared Solutions (the Copaxone support people), it's "like" an allergic reaction--but isn't. I've never heard of an epipen being useful for Copaxone reactions.
Your neuro should not dump you just because you don't want to be on any MS drugs. I still have a neuro even though I went off Copaxone about 3 years ago. I just see him much less often. When on Copaxone I saw him once or twice a year. Now I'm down to once every few years.