Weight gain, anybody?
I'm becoming frantic over the fact that I've gained about 15 pounds (~7 kg) since I was diagnosed in January 2022 and more specifically since I started prednisone, which I've been on for most of the past two years. I try to stay active - I play pickleball for a couple of hours one to three days most weeks, referee soccer in season, ride my bike, hike/walk, and do pushups and other weight-bearing exercise at least once a week.
However, now that we're getting toward winter, I fear I will be unable to maintain as active a lifestyle and I'll end up picking up even more weight since the prednisone seems to supercharge my appetite. I'd be interested to hear what other folks do to help counteract the appetite-enhancing aspects of prednisone and/or how folks maintain their activity in the winter. I do have a gym membership but frankly haven't utilized it much in the past two years except for indoor pickleball during the winter - which can be pretty long here in Wisconsin!
Honestly, I called myself a ravenous weasel when I was on prednisone.i walked/ exercised as much as I was up to, but seriously the only way I could keep the weight off was to count calories. Otherwise mindless eating just put on the pounds. Lots of liquids, healthy snacks. At one point I was on 60 mg of Prednisone. I've had mg 45 years and it took years to get stabilized. I know some people say, don't worry about your weight, but it seriously depressed me. And, I had major face muscle issues so I literally lived on a liquid diet at times. Best wishes.
When I was first diagnosed I was put on prednisone but with the permission of my neurologist I weaned myself off this particular drug because the side affects were horrendous. Weight gain and swelling of my legs, ankles and feet. I could not wear shoes for about a year. After a thymectomy I have been in remission now for four years with no symptoms at all but still take mestinon and mycophenolate on the advice of my neurologist
We appreciate you sharing your experience!
- Jodi, Team Member
I completely understand your concern about weight gain; it's something many of us can relate to, especially when dealing with the challenges of MG. It can feel really overwhelming to navigate these changes and the identity shifts that come with them. I think you might find this article comforting and relatable: https://myasthenia-gravis.com/living/changes-in-appearance.
When it comes to weight loss medications, many people here have shared their thoughts, but unfortunately, there isn't much research yet on how they might affect MG. I want to encourage you to consider ways to stay active that work for you. A stationary bike could be a great addition to your home, or you might find it helpful to explore workout apps like Beachbody. They offer live sessions with instructors and can provide that extra motivation through reminders on your phone. Remember, you’re not alone in this journey, and we would love updates as you navigate making exercise and physical activity happen even during the winter.
- Jodi, Team Member
Hi
hopefully others will respond with anything that they have done. One of prednisone's side effects can be weight gain. Have you mentioned this to your physician and asked their thoughts? I shared a couple articles written by others and their experience with prednisone, just in case they may be of interest - https://myasthenia-gravis.com/living/prednisone-experience. And https://myasthenia-gravis.com/living/prednisone-coping. Wishing you well. Kindly, Jessica (Team Member) Thanks - I have spoken to both my PCP and neurologist more than once, but neither has really addressed it, similar to another medication-related issue I have (diaphoresis). Since they don't seem to have any answers they just sort of shine me on...
