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Isnt it better to take more mestinon than more prednisone?
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Basically, the answer is yes. If you can get along with mestinon alone it probably the best as it has a very good safety profile and to the best of my knowledge very rare if any long term side-effects. But, the other side of the coin is that mestinon has no effect on the illness itself. It's like taking tylenol for a headache. Steroids can lead to remission in some patients. But, you need to reach a dose which leads to full control of the illness. So, increasing the dose of mestinon while you are increasing the steroid dose can be confusing. (and this illness is confusing enough any how). In fact one of the people on this forum (don't remember who and when) mentioned that his neurologist didn't want him to take any mestinon, just steroids. And there is some sense in that. Some people end up taking only symptomatic treatment either because they had no response or had serious side effects with immunsupresive treatment. I personally think that when you have a disease which alters your life, it makes sense to try and treat it with reasonable treatments before deciding to come to terms with it and use only symptomatic treatment. It sounds like you are having some response with a relatively low dose of prednisone, so it would make sense to gradually increase it until the max. effect is reached and then start tapering it down with or without another medication such as imuran. There are patients who are stable for many years on a very low dose of medications. |
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I suspect that like many others with MG I have additional health issues (I know Hashimotos) none of which are as disabling as MG but many of which seem to be helped from the med's (mostly since started prednisone). For ex - for past couple years my menstrual cycle has been brutal, very heavy and very painful - last month after 3 weeks of prednisone was totally normal. Another ex off the top of my head is I have had chronic constipation since GBS in 1984 now almost normal.
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Roger,
That is interesting approach but for me that would not be option for me as every day without relief is causing extreme financial hardship. Waiting any longer for relief would certainly cause me to lose my law practice/all income/support. So clearly it is important that we all remember that not only is MG different for everyone, everyone has different circumstances that come into play when deciding how to proceed with treatment. |
Steph, I really am so frustrated right now I would love to try mestinon. I admire all the courage I see in so many of you that have suffered so long. I am just about 5 weeks since my first noticable sypmtoms and 3 weeks from diagnosis. I see so many people not able to find a Doctor to diagnos them. In some ways I was lucky I had all the classic signs and found the right Dr so quickly. He ordered the right tests and even took videos as a teaching aid during my examination.
I may cave before my November appointment and ask to try the mestinon but I am trying to do it his way for now. |
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I think there is something very true in my neurologist's philosophy that this illness requires that you be patient enough with it's tough healing process and trying to find shortcuts can only make it much harder and longer. I think this is also what Annie was trying to warn you about. You seem to be on the right track, so just stay there and move slowly until you reach your destiny. |
Roger fyi i had symptoms for years (had been told in my head though) and over the last year had really deteriorated to point of not being able to function, support myself.
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