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Do you often feel frustrated that Myasthenia gravis interferes with your weight?
Do you often feel frustrated that Myasthenia gravis interferes with your weight? Does it lead to concerns about your physical well-being and overall health? -
6 Replies
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I dramatically gained weight during my first year with MG and the high dose of cortisol (100mg daily over months) lead to increased appetite and terrible cushing syndrome. Tried to start all kinds of diet efforts without any successs at all. With heart problems occuring at the same time, weight loss became a must. Meanwhile I lost a substantial amout of weight, but I still find it frustrating that being on a diet has become such an integral part of my life. I have reached a point where it appears to be rather painful to lose any pound taking away strength that I would urgently need to cope with other MG symptoms and flare-ups.
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I gained a lot of weight with Myasthenia. My right hip severely deteriorated to bone on bone. I needed hip replacement surgery. I had to loose 70 pounds before the surgeon would agree to the operation. It took two years of very low calorie dieting to get there. The Semiglutide medications caused severe depression. I just had to quit eating. I was able to get help from a special Gastro clinic and I finally made it. All of the people offering uninformed suggestions was the worst.
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Both prednisone and Vyvgart put on the pounds. Increased appetite and exhaustion make dieting and exercise difficult. It’s very aggravating to say the least.
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I’m an MGer going on 5 years, taking Prednisone for the last 4. I was somehow able to keep my weight gain (from the Prednisone) to around 20 lbs. This was about a 15% increase in my normal healthy weight. I’ve been able over the past 6 months to lose about half (10 lbs.), but seem to have reached my weight reduction limit, no matter how hard I try. If/when I finally come off Prednisone, I hope I’ll be able to resume shedding lbs.
The lost weight so far has resulted in my feeling more energetic, healthier and having better balance when walking. Part of my solution to losing weight was to try increasing physical activity. More importantly, I had to really study the subject of nutrition, and thus learned to cut out all ultra-processed food and unnecessary snacks and treats from my diet. It takes many months of self-discipline to change life-long eating habits, but having learned just how badly ultra-processed food injures so much of your body’s internal organs and systems helped motivate me to permanently and radically change what I put into my mouth every day.
After learning so much about good nutrition, I posted (and continue to post), for other MGers, those links (to my sources) which I published on this webpage.
sites.google.com
So. Cal. MG Support Group (calmggroup.com)
So. Cal. MG Support Group (calmggroup.com)
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It will be two years in July that I was diagnosed. I am on 60 mg of Mestinon three times a day. I was on Prednisone for a short time and the IVIG infusions for four months. So far, I have not gained weight. My appetite has decreased and I just lost nine pounds. It is a combination of walking a mile 4-5 times a week and less of an appetite.
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Limits my ability to do meaningful exercise. But it could be age.
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