Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Almost all the drugs we take are potential poisons, that is especially true of the drugs we take for MG. Whether they are produced by pharmaceuticals or are natural, they carry the same risks (not to the same extent) of misidentification/mislabeling (actual drug, potency, fillers), idiosyncratic reactions, interaction with other drugs and with foods and drink, especially grapefruit juice and alcohol. Our doctors are dependent on us for accurate reporting (including dosage) of all the drugs we are taking. We cannot be dependent on our doctors to know everything about the interactions with our disease and our other medications and foods (sadly). The more we know about MG and the medications, the better the questions we can ask and research. Radical changes in diet are comparable to taking drugs, with much the same risks and potential benefits.
In general the fewer drugs we can take, the better off we are. We need to take all the drugs necessary for the life we wish to lead, which is a risk/benefit decision that I believe should be ours and a well informed one. (That is the reason this therapeutic nihilist takes a handful of drugs every day.) We need to be honest with our doctors about side effects and adverse response as well as improvement. We need to recognize that what works for one person, may not work for another, and what causes harm to one person, may not cause harm to another--a daily problem for those who treat us. In our experience the same drug that causes no harm to one person may result in necessity for artificial ventilation for another. Do not expect because you have taken a drug without problems before that it will not cause problems now. Do not expect because you are using a small amount or just putting it on your skin, it will not cause problems. We need to monitor every new drug for potential difficulties, which also means trying not to start or increase or decrease medication when those who understand our problems are not available.
We need to get well and stay well :-)
So we share our experiences with MG drugs, antibiotics and cardiac drugs and dietary manipulations, etc. and we need to do that, but it may or may not apply to the individual who is reading the post. We were flaky uh . . .snowflakes even before we got MG. b.
In general the fewer drugs we can take, the better off we are. We need to take all the drugs necessary for the life we wish to lead, which is a risk/benefit decision that I believe should be ours and a well informed one. (That is the reason this therapeutic nihilist takes a handful of drugs every day.) We need to be honest with our doctors about side effects and adverse response as well as improvement. We need to recognize that what works for one person, may not work for another, and what causes harm to one person, may not cause harm to another--a daily problem for those who treat us. In our experience the same drug that causes no harm to one person may result in necessity for artificial ventilation for another. Do not expect because you have taken a drug without problems before that it will not cause problems now. Do not expect because you are using a small amount or just putting it on your skin, it will not cause problems. We need to monitor every new drug for potential difficulties, which also means trying not to start or increase or decrease medication when those who understand our problems are not available.
We need to get well and stay well :-)
So we share our experiences with MG drugs, antibiotics and cardiac drugs and dietary manipulations, etc. and we need to do that, but it may or may not apply to the individual who is reading the post. We were flaky uh . . .snowflakes even before we got MG. b.
It's so with all of what you mentioned, drugs and diet. Nobody will know better than each of us what anything we ingest is doing to our body. All the warnings written on a pill bottle (or a carrot!) will not dictate what your body does with it.
I had this neuro telling me I shouldn't be taking mestinon because of all the horrible side effects. He never would hear me when I told him the only thing it does to me is make the tummy trouble I already have a little more urgent. I went to a different neuro who listened to me, and in five minutes had doubled my dose without batting an eyelash. So that's important too, having a doctor that doesn't tune out what you say your body is telling you.
You know, I think I saw a headline for some news article in the last few days about how people's bodies process drugs differently. I'll have to find it, I wonder if it would be helpful to this discussion.
Even something as seemingly innocuous to most people as Benadryl... both my mother and I process it so slowly that we take 1/4 - 1/2 dose and it stays in our systems for more than twice as long as it's "supposed to". The same goes for my dog... uh...
I have the same problem with Benadryl, taken orally, it takes forever to work and then forever to get out of my system. I realized that was why I was coming home from IVIG and sleeping for a couple of hours, but wide awake the whole time in the infusion lab. When I take it at night, I am hung over the next morning.
We have had to adjust the dosage down on my blood pressure medications recently, although the other medications are supposed to make the situation worse. I've tried antihypertensives other than the beta blocker, metoprolol, which doesn't seem to bother me except maybe thinning hair, but for my volatile blood pressure they don't work as well--BP too high and too low on the same med and dose. Lisinopril was great but coughing kept both my husband and me up at night. My Dad with MG had to take atenolol (another beta blocker) for his hypertension, although he, too, tried other medications.
I think some institutions are recognizing and testing for genetic differences that affect drug processing, IgA testing before IVIG and thiopurine reductase before Imuran, are two I have had. b.
Unfortunately, none of my doctors, even those that have provided me with wonderful treatment and therapy - seem to care much about my problems with secretions and/or phlegm.
They see this problem routinely, in other patients - and probably view the situation as something with many, many causes, and not worth an investment of time and testing, as long as the lungs are not yet impacted.
I understand the doctors' point of view. Yet this does nothing to help me, with a problem that has caused considerable distress, over a long period of time. With a constant concern for pneumonia, and the awful, major side-effects - that can result from treatment for severe pneumonia with strong antibiotics.
So I do the best that I can, to cope with the situation. That's all any of us can do.
Hopefully someone here, will benefit from these experiences. And then, taking into account - their own personal knowledge of their situation - along with the best advice that can be gotten from their doctors - hopefully they can find some sort of relief from a distressing symptom.
- Ross