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Q: Doctors Don't Want to Reduce the Topomax Dose - Suggestions?
I actually have a question about topomax. I was put on it for
seizures. I have been on it for 10 years at a dose of 800mgs daily. I have
questioned my Dr.s and nobody wants to decrease it for me and be responsible. My
concerns are what are the effects that long term has to my system when FDA is
not even testing it at this level. I have been having alot of back and bone pain
and now muscle loss is happening in my right leg over the past year or so. No
medical reason can be found for this. I would like to ween myself of this
medication but I feel it should be up to the medical profession and not me. I
cannot get assistance with this. What do you suggest. Any answer would help me
greatly.
Betty...
Dear Betty --
I understand your question.
Generally, the physician who is actually physically writing a prescription is
the one who is responsible for adjusting the dose, as well as being responsible
for looking out for long-term consequences. Therefore he or she should
theoretically be the one with whom you have this discussion.
Unfortunately, I know it gets more
complicated than that. Theoretically, there should be one physician or nurse
practitioner who is officially in charge of making sure that you do not have
another seizure. Obviously their interest, in this case, is to make sure that
you have enough medication on board to prevent one; although you have to admit,
this is in your interest as well.. Everyone gets nervous at the prospect of
trying to dial the dose down, because there is no easy way to anticipate when
anti-seizure coverage is getting too low. Since this is not my specialty, I
would have to defer to your neurologist regarding how to determine what does you
need, and what the minimal dose might be.
In the old days, patients just went
along with what they were told to do by physicians. Things are changing now,
but that just makes a situation like you describe more complicated -- as
patients begin to take more responsibility for determining, or at least paying
attention to, long term safety issues. Here are some general thoughts about
talking with doctors. Good luck with the
process --
Dr. Phelps
Published May, 2008
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