I was diagnosed a year ago. Started out taking Pyridostigmine and Prednisone 40 mg. On my last visit with the neurologist, he reduced the Prednisone to 30 mg, and started taking Cell Cept. It's an anti rejection drug for transplant patients. This is an acceptable replacement for Prednisone for some people. It doesn't work for everyone. Soon we start the process of weaning me off Prednisone.

Hi Phillip, You have and are going through a lot! The hospital stay must have been especially scary. The fact that your body has responded in positive ways is good to hear. It’s just a lot for someone to deal with!

Your physical issues are much more varied than I’ve experienced, but digestive issues have been a concern for me for the last 3-months. After several med adjustments, I’ve decided it’s probably triggered by the drugs, STRESS and not eating well enough. Thus, I’m now working with a nutritionist to make my overall systems stronger. I had the same reaction about 5 years ago in response to another medical condition and surgery. Nutritional help got me back on track.

The good news is that nutritional knowledge has come a long way,
and it no longer has to be “don’t eat this don’t eat that”. I meet with Grace, my nutritionist online. She lives in Oregon and I live in Massachusetts🤣 She works with a team called Crystal Savoy, RD. They accept my insurance. There was an initial fee of about $150, and a stool test not covered by insurance (yet, maybe someday they will be) $700. This test and what I told her during the intake meetings gave her the info she needed. I now have a plan that looks really good.

I’d really gone downhill with my eating. I lost a lot of weight, but was depending on sugar for energy & happiness. I found and have read that sugar increases leg cramps. Better eating is helping this condition.

I’m also working on reducing stress, but this is enough for now. I hope your good days increase!

I was taking 20 mg. of Prednisone since May....my mg neurologist has now reduced it to 15 mg. See her again on October 23rd....but, I believe its the Prednisone is that I can't sleep at night...up at 3 AM for the day. As far as mestinon, I am on 5 per day..she wanted me to try 4 and I did for 2 days, but I could not do that and I had to up it back to 5. No affects on me whatsoever, just lucky I guess for mestinon. For 18 days of mestinon the price just went up $18.00 over what I was paying in the last 2 weeks.

This is one of the reasons I won't take prednisone , its a good & bad drug that has lasting effects , for being used such a short time , there are alternatives I'm willing to try instead❤

Hi Nancy, I was diagnosed with Ocular MG in Sept 2015. With the guidance of my neurologist, I was able to go into remission early 2016 taking Prednisone and Mestinon. I was in remission until January 2024. I am currently again taking Pyridostimine Bromide and Prednisone. I am still trying to get off the Prednisone. I am working with my PCP and current neurologist. My eye is drooping and appears to get worst whenever I reduce the Prednisone. I have an appointment with the neurologist in November so I am hoping he can help. It seems like I am running my own drug therapy. It's been almost two years and I deal with this everyday trying to see what is working and what is not. I can't seem to get off the Prednisone. It is much harder to get off of it this time.