Myasthenia gravis, mycophenelate and weight gain?

Question

I have had myasthenia gravis for 30 years and I have been able to control my weight with some difficulty. In October I had a severe myasthenic crisis following a chest infection. My steriods were increased to 80mg daily and the Mycophenelate was increased to 1250mg daily, resulting in a substantial weight gain. The steriods have now decreased to 30mg daily and the mycophenelate has stayed at 1250mg daily. Although I am watching my diet, my weight is increasing, since October I have put on 36pounds. Has anyone been in the same position and managed to loose weight, or do I have to put up with it.

Answer 1

It's not impossible, but it is definitely harder than it is for someone who isn't on medication.

I take 40mg of steroid every other day - up until recently this was 50mg. I have also taken mycophenalate as an experiment to see if it might help my neuro condition (it didn't).

Since I was diagnosed seven years ago, I've put on about 6 stones. I joined Weight Watchers recently and yes, the weight is coming off but at a very slow rate. It takes massive willpower and self-discipline, because steroids make you feel hungry a lot of the time (as you'll know), and also fat gets stored in odd places.

It's not impossible - any loss is better than none at all and if you can be patient it will come.

Best of luck - I understand how hard this sort of condition, and the side effects of the medication can be really difficult.

Answer 2

I am not aware of any side effect of mycophenolate which involves weight gain - however steroids do definitely cause weight gain. 30mg steroids daily is still a fairly large dose which is probably the cause. It may be worth getting your blood sugar checked as high dose steroids can sometimes lead to diabetes developing which could also affect your weight.

I hope you find something that works - good luck.