Doctors Don't Want to Reduce the Topomax Dose - Suggestions?
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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.


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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