Are there any drugs that cause side a... - Charcot-Marie-Too...

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Are there any drugs that cause side affects to CMT sufferers

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I have botox treatments, my neurologist tells me has to be cautious with doses because of my condition. Apart from that I am allergic to many other prescription drugs that has nothing to do with CMT. I await answers with interest.

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CMTA, one of our counterpart organizations in the States, publish a list of drugs that are potentially a problem for people with CMT. You can find the list here

cmtausa.org/index.php?optio...

However, with the exception of Vincristine, these risks, whether they are negligible or otherwise have NOT BEEN PROVEN to be a problem. So if you are on one of the drugs, don't just stop it - discuss the implications with your GP, or preferably neurologist. We tend to take a more pragmatic view in this country.... ! But if you are concerned, there are almost always alternatives.

Professor Mary Reilly, our main adviser, doesn't believe we should be overly concerned, but another neurologist put it this way - if a "normal" person, at 100% of capacity (in respect of the peripheral nerves) loses 10% of that capacity to side effects of a drug, that is not significant. But for someone at 50% of capacity, a 10% drop could be a problem.

Just bear this list in mind, but don't be too hung up on it. Even with Vincristine, you could argue - if it's the only chemotherapy that is going to save your life, perhaps worsening your CMT is a small price to pay........

Karen

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