Let's talk about drugs
with Linda Crabtree
You and your doctor - a powerful combination
About drugs you should not take when you have Charcot-Marie-Tooth disease
None of us want to do damage to our bodies. We try to eat right, to get enough sleep and to exercise as our CMT permits, but when our doctor prescribes a drug for us, we really haven't the expertise to know if it will hurt us or not. The first thing we must do is make sure that all our doctors know that we have CMT and that they are aware of what some drugs can do to nerves; then, each drug has to be weighed in value of its benefit to you and what ails you. This is between you and your doctor.
I had a scare when a lump was found in my breast during a routine mammogram. The fear of cancer was front and centre but the most profound fear came from knowing that many, many drugs to treat cancer are on the list of drugs we should not take. Before I had even found out what the lump was, I was preparing a file on drugs and getting myself together to discuss drug therapies that would be suitable for me and my particular case of CMT. I am so sensitive to just about all drugs that I've learned that I have to advocate on my own behalf with any health care professional I may see because he or she IS NOT going to know anything about me and will simply prescribe the normal adult dosage of anything unless we have a good talk and he or she really listens to what I'm saying.
The lump turned out to be nothing to worry about but, if it had, I would have asked for the best cancer specialist possible and made sure he was up on CMT and the cancer drugs that can make it worse. I also would have made sure he knew how terribly sensitive my system was because we are all affected differently by our CMT, all of us react differently to drugs, and no one dosage is right for everyone. I certainly wouldn't want to refuse a drug that could cure my cancer but I wouldn't want to end up much worse than I am now (my CMT is severe) if there was another drug or therapy that could do as well but not make my CMT worse.
Weighing the pros and cons of available therapies is the only way to go whether they be for cancer, bladder infections, fungal infections, whatever. The value of the drug to you, is there something else just as good, and what will it do to my CMT all have to be taken into consideration. My motto is: BE AWARE and BEWARE which means be informed or aware of what can harm you, not just from this list but from everything you've taken and the experiences you've had throughout your lifetime with drugs, even vitamins. And, with this knowledge, be forewarned that you can be harmed by some drugs whether they are on the list or not. This list is not written in stone. I've heard from thousands of people who have had negative reactions from other drugs, some of them quite severe and some that were lasting. It is the nature of a drug to provide a reaction, a positive one is what we all strive for or we wouldn't take it, but with the positive can also come a negative.
Take this list to every physician you see. Make sure he puts it on the inside flap of your folder so it doesn't get buried and make doubly sure that he is aware of the fact that you have CMT and that your CMT could be made worse by certain drugs. Then, taking all this into consideration, it is up to you and your physician to look at the problem that exists and to look into alternative drugs that might not pose a risk to your CMT.
Dr. Thomas Bird, Chief of Neurology, Department of Veterans Affairs, Medical Center in Seattle, WA and one of the advisors to CMT International, said that Dilantin, which is a commonly used anticonvulsant drug for people with epilepsy or seizures, is most likely safe and poses little risk in reasonable doses. He also said that the patient should bring these issues to the attention of their doctor and other equally efficacious medications should be used whenever possible.
The drug list also names several drugs used in the treatment of cancer, such as Vincristine.