Hi Kathie,
Your last post confirms that the neuro you have been seeing is not an MG expert: start steroids, wean off and THEN start an immunosuppressant is a bizare prescription. You should know that immunosuppressants may take quite a long time to act, some for several months or maybe a year. That´s why usually steroids AND immunosuppressants have both to be taken for quite a period of time to give a chance to the immunosuppressant to kick in and only after that, start tapering...
I think you´ll be in better hands with Dr Drachman.
Maurice.
You should have a look at
http://neuromuscular.wustl.edu/mtime/mgrx.html

Thanks everyone. I was beginning to think I was being irrational for expecting more. The resident wanted to send me to some specialist doctor that tried to help improve the quality of my life. I am not ready to settle yet. I feel I have not even begun the fight (treatment) yet. I just have to wait 3 more months and hope Dr Drachman takes me on.

Maurice, this is an excellent link for treatment options, giving the dosage and how to wean off the pregnisone. I knew the method they were using did not seem right. This really helps me since it looks like I am on my own until the new neuro appointment in early October. I did not follow the resident instruction of 15 mg every day and instead tried to mimic everyone's else past experiences. I am felling much better. The headaches, muscle and joint aches have subsided. Even the fatigue is a little better. I feel like I can hang in there for the new neuro and Dr Drachman. Before I did not even feel functional.

Thank again everyone, I do not know what I would do without this forum,
kathie

I saw my new neuro today. She did the most thorough exam I ever had. She seemed surprised I was walking without a mobility aid. We did discover that without my prism glasses, everything is double vision now.

I am down to 10 mg of pregnisone now. I am extremely fatigued at onlt 10 of pregnisone. My new neuro wanted to know why I was not on cellcept or imuran. That was my question. She upped my mestinon to 90 x 4 and the 180 at night. She is gathering all my records. She is also performing upper and lower Emg on my limbs.

I was sent back to the rheumy by the gastro for more autoimmune testing. They ordered a bunch more antibody test for lupus, Sjorjens and others. I told him he was right about the MG. He said he has another patient at his other office with probably MG and asked who diagnosed me.

I think the new neuro will treat more aggressively.
Finally,
kathie

Oh, I forgot one thing. The new neuro thought I had a peripheral neuropathy related to another autoimmune disease, besides MG.

kathie