Myasthenia Gravis

[Billie]

I was on pyridostigmine for the last year. My eye symptoms are resolved. I haven't been back to the neurologist. So...I took myself off this med. It's been about a month now. I don't know that I feel any different. My eye is normal still. I still have the trigeminal neuralgia, but have stopped taking the tegretol for that as well. I am not a good patient, but..I don't want to take meds I don't need.
My question is: If you are dx with MG are you forever dependant on these medications?
I just can't see taking them if I don't need them.

[browen01]

HI,
As a nurse I'd say it is never a good idea to stop any medication without your MD's knowledge, especially Tegretol. It could have some adverse effects, and at the very least, nothing is worse than having to go back and say I didn't follow your orders, can you fix me now. It's been about two months since your post, how are you doing without these meds? As far as being forever dependent, I can recommend two you-tube seminars you can watch. Go to youtube and type in Myasthenia Gravis seminars. Two should come up. One is by Dr. Robert Pascuzzi and he addresses your question in his lecture. The other entitled, "Fatigue, Sleep and Myasthenia Gravis," is just very interesting. That is by Dr. Rubinstein and he talks about several things including how symptoms of MG can come and go or change location from day to day. I just checked and both seminars are still being shown. Hope that helps.

[amm34]

I would agree- Tegretol you may want to check with your doctor about- are you using this for seizures??? The Mestinon you can go off it. It is purely a symptom control med with a short half-life, so if you don't need it, it's fine to stop and start it. I titrate mine all the time based on my activities. If you are on any immunosuppressants or esp steriods, DO NOT STOP these without letting your doctor know. You can get re-bound effects with stopping immunosuppressants and end up in crisis or if you get sick and stop steroids w/o tapering you could go into an adrenal crisis and this is very serious. What happens is your adrenal glands quit making cortisol, a stress hormone, while taking high does of the drug, so when you need it, you can't adjust physiologically. It is important to slowly taper to allow your adrenal glands to ftn again. Also, for up to 2 years you should take supplemental steroids for any procedure that will stress your body if you have been on greater than 20 mg of prednisone for greater than 2 weeks. Be careful with stopping. I speak from experience of ending up in the neuro ICU b/c I stopped taking immunosuppressants b/c they made me sick. Now I suck it up- if i have to be on them forever, well at least I am not in the ICU. Some ppl with MG need it forever, up to 1/3 go into remission med free... With the potent ones, talk to your neuro.

[sewray]

You are courageous. I once went off of my meds but it was at a bad time and depression. I found out just how sick I really was and the extent that the meds were helping me.
I am told that the meds are for the control of the disease. You can self regulate the meds with the doctor based on needs. My doctors have encouraged this line of thought. The dangerous drug to stop cold turkey on is the prednisone if you are on that. The mestinon is not that big of a problem. However it sounds like you have a remission of the disease. keep in mind that you will eventually need the drugs in the future but there is no telling when. You know the symtons and should always be aware of them incase they come back. Congradulations.