Shadow597,
First, let me say that I am NO expert on weight maintenance! However, I wonder if a consultation with a nutritionist would be of benefit? I am not on steroids, but know your struggles are real.

I could be wrong, but I think the moon face may be entirely unavoidable as long as you are on steroids. I assume it goes away once you are off of steroids, but I am not certain. My understanding is that the weight gain is possibly avoidable IF you are able to control your appetite. I was on steroids for several months years ago and did not gain weight but I literally could not eat. However, I remember crying frequently due to hunger and the gnawing sensation in my stomach. I probably would have experienced weight gain if I had been able to eat!

One thing you may try is to increase your fiber. It will make you feel full. I use organic psyllium husks stirred into water. You can sweeten with honey--or a sugar substitute, if preferred. I am attempting to avoid all processed foods, so I drink it plain, but it is by no means a comfort food! Also, increase your fiber gradually or you will have unwanted and potentially embarrassing gastrointestinal symptoms.

Another trick you may try is to substitute cauliflower for your starches. Look on the Internet and/or Pintrest for recipes. The ones I have tried are quite good!

Don't give up! I am sure others on the forum can give you more practical advice and first-hand information.

Hi Shadow597, There is no gluten in potatoes... Gluten is found in the foods on the list shown in the link. If I were you, I would just sit down with a bowlful of delicious potato salad, made Italian style with: potatoes, and a bit of very sweet onion, dressed with olive oil, wine vinegar, fresh mint(a delight in this dish!!!!!!!!, an absolute must!!!), a tiny bit of garlic, a pinch of black pepper, and generic dried Italian seasoning. Then cry...tears of joy, as you wait for prednisone to be reduced to the point that the moon face will start to go away, and weight problem will be more easily remedied with diet. .....https://celiac.org/live-gluten-free/glutenfreediet/sources-of-gluten/

I'm sorry,I wrote gluten instead of starch. For the moonface I can't do anything now but I still don't know what to do with my favorite foods :(.
Nothing is good without bread!

If you find a solution you would be a millionaire. Ive Been on 40 mg for 4-5yrs. One problem is chewing,raw fruits,veggies ,salad, meat are
Tiring to eat but carbs are easy. Take a look at 6/16 today show. New device for weight loss. I assume it's fda approved but I was astounded. They implant small catheter to stomach,you eat whatever then attach device to suck out some food (calories).imagine how much you could eat .? What about nutrients how long do you leave food in etc? I thought it was drs version of bulimia but whatever? Good luck on finding what works. I gained 20 lbs in 6 months but have stayed there. Face feels very puffy now summer heat is here

I have a high metabolism and have always been super thin. I'm still thin, but I have a definite moon face. Can't wait to get off the prednisone! I've gained about 5 lbs, which is a lot for someone who has a hard time gaining. It stinks, because we can't exercise to top it off. I try to eat healthy. I've found that I don't eat when I feel hunger, just when I know I need food. Still gaining though. I try to not eat much salt, because then I retain even more water in my fat moon face.

I am at a normal weight now, but still have moonfaced, I'm sorry to say. I don't have any good suggestions about cravings--they don't seem to change regardless of what I do. I've compensated for the weight gain with exercise, but I know that's not realistic for every MG patient.

Thank you all for your support,this forum always helps me to be as happy as I can because I see that I'm not the only one with these problems.Thank God that I searched!

I'm in the same exact boat so I completely understand! Moon face and weight gain are frustrating, especially because it's not really your fault (we can't help that we need to take predinsone!). It's hard to see old friends you haven't seen in a while and not be a little self conscious! But I always remember that I am thankful that I'm healthy (not in the hospital), and that weight loss is always attainable!

Unfortunately at the moment exercising is a little difficult because I have an IV catheter in my chest, but my (not expert) advice would to be to find an exercise plan that works for you and balance it with a healthy diet. Carbs and starches are OK to eat! I think the key is just making sure you're eating an appropriate portion size. When you're on prednisone, it's easier to gain weight so just try to be conscious of what you eat! Overall, I'd try lots of fruits and vegetables, healthy grains, and exercise and see if that helps!

jesssssx07
yess I'm always worried when I see old friends but it's ok,we are not only a number on the scale.I hope the IV catheter will go away soon so you can feel a lot better.

The last two days I tried eating everytime I had to take my mestinon, every 4 hours,and a fruit If I get hungry. It's working for now!
Also I didn't eat bread for two days and I think my cheeks are a little bit smaller. Of course it's not a big difference but I think it helped me with their big swelling.
Let's pray that some day we will not need pred!
(Sorry for my english!)

That's great! With the summer here, it's a lot easier to get a wider variety of fruits so hopefully that can help!