I was on prednisone and imuran. I tapered off the prednisone slowly, starting at 60mg and tapering down monthly...50, 40, 30, 25, 20, 15, 12.5, 10, 7.5, 5, 2.5. I am no longer on imuran, as they believe it is what caused 3 pancreatitus attacks. First one they removed my gallbladder and said I was loaded with gallstones. Second one they took me off imuran. Third one they shrugged their shoulders and arranged for me to have an endoscopic procedure where everything looked normal. I am currently on mestinon, but take only as needed....right now it's been over a week since I've taken one. I have had a thymectomy back in Oct '11 because I had a thymoma. I have never been on cellcept. So far, so good...

Don't be afraid of Prednisone.
(Unless you already know, that you might have some kind of sensitivity.)

Prednisone has been a vital part of MG treatment, for many of us.

Yes - many here - have been very successfully weaned from Prednisone. For most of us?
This was accomplished - using a deliberate, neurologist supervised, tapering schedule.

For some of us? Reducing, or tapering off entirely? Became a necessity, due to side-effects or sensitivity to prednisone.

For many years, I was on low-dosages of prednisone.
10 to 20mg daily - to treat mild-to-moderate generalized MG.
When I had a major flare-up of MG? I was put on 60mg of prednisone daily, along with many other therapies.
(Many here - have been on dosages, higher than 60mg.)

I'm now down to 20mg daily and holding.
(Holding, while I am also tapering IVIG.)
I found I was able to taper by 5mg of prednisone, every 3-weeks.
Some people can taper more quickly, some taper are better off, to taper more slowly.

Generally, for me? So far, so good.
- Ross

No prednisone here. Mestinon was the only meds at the time I was diagnosed. When I came out of remission last year just was using mestinon alone, till this last June when the doc started me on cellcept.
I told my doc no on prednisone unless it was really necessarily. Cellcept was my compromises. He hopes that I can go back into remission.

Since my diagnosis in January, 2012, I have been on Cellcept and Mestinon only. It's impossible to predict if I might be in a different place today in the MG process had I taken Prednisone at the onset. Luckily I've not had a crisis to date but my symptoms continue to very slowly worsen.

This is a great question for your neuro.
Larissa

I have been weaning off of Prednisone for 8 months. I started at 50mg a day and am now on 2.5mg per day. If all continues to go well, I should be off of it completely in 2-3 weeks. I also take Imuran and Mestinon.

Carolela,

How long have you been on the imuran and at what dose? Does it seem to be controlling your symptoms?

I have increased my imuran to 200mg (which seems like a lot to me?) and am currently on 5mg of prednisone daily which i am also going to taper very slowly soon.

I was on prednisone for 3 yrs and cellcept for 1 yr., then due to several bouts of diverticulitis ( infection in colon) each getting more severe I was taken off cellcept sept 14. and am weaning off prednisone so I can safely have and recover from surgery next month.

the highest prednison I was on was 25 mg., no higher due to side effects. I am currently on 2.5 mg every other day and will stop this weekend. So far my arms and legs have gotten weaker but eyes, eating and breathing are fine.

I don't know if I want to go back on cellcept, so fearful of having my immune system so suppressed that i get other infections... we shall see.. Might just stick with mestinon..again have to wait to see how surgery affects me, and of course advice of neurologist.

I take mestinon and Cellcept, and have IVIG every month or two. They never started me on prednisone, due to severe depression. It is not a safe choice for me.

Never steroids. Cellcept monotherapy for almost three years. IVIG to push back MG one time with one round of infusions. Mestinon tablet and mestinon timespans along the way to deal with symptoms.

Down to 60-100 Mg of mestinon a day and cellcept 2000mg a day with a very stable and active lifestyle. Muscles do wear down faster than before and overuse results in weakness of area for days to recover completely. I now await a true and complete remission.

I was on Mestinon for a short time but it didn't do anything for me at all. I can't take any steroids so now on Imuran and so far it is working for me.

I have been on Imuran & Cellcept which I didn't tolerate well at all. Severe flu symptoms, gastrointestinal problems, bacterial & fungal infection. IVIG for 1 1/2 yrs with no positive result & for about 2wks after weak & headache. Mestinon had no positive effect. I had malignant thymoma so my thymus gland was removed with no positive effect. I have been on steroids in the past with side effects, mood, irritability, eating like crazy & unable to sleep. I am also very overweight since being unable to be active, have a history of major depression, hypertension....it was never a recommended treatment for me. I did have a solumedrol infusion before IVIG to reduce headaches. Nothing has been effective and safe for me. I am slowly getting weaker. Next recommended treatment is Rituximab. Not sure if insurance will pay. I have only three days on my timesheet....the infusions are 2xwkly for 4 weeks I believe. Trying to build up my time. Am afraid to try anything since I have reacted badly to several....Good luck to you. Be well! Barb.

Hi family
I'm on 9 mg of prednisone and 200 mg Imuran .

My Neuro recommended no prednisone unless absolutely needed. I'm on Mestinon, Imuran, and IVIG every 6 weeks. Wishing you all the best.

I am not on Prednisone and haven't been for about 15 yrs. I was put on it when I was first diagnosed - 100 mg every other day - and then after a year, i had a thymectomy. We then weaned off it, it took about a year. I have never taken since and will only take it, if I have a crisis situation. Prednison and me did not get along at all!! I have always taken Mestinon, 60 mg 3x a day, and I took Cellcept for about 10 years. I am presently taking Imuran, it has been about 4 years taking it. I also tried IVIG, but it didn't do anything for me except make me sick as a dog for days, so I function pretty well with the Imuran and Mestinon for now.