Weight Loss and MG

[Dave Hall]

Before I retired I weighed 215 to 220 pounds and was only 5’ 8”.   I was in sales so I was taking customers out for a nice lunch several days a week.  Plus I was taking my wife out to eat several nights a week and weekend breakfasts.   A year after I retired I was diagnosed with MG.  I was very lucky in that my PCP had worked with two patients back when he was an intern so my diagnosis was immediate.   Today, I weigh 155 to 160 pounds.   I now make most of my own meals and rarely go out to eat.  Did the MG effect my weight?  I don’t think so.  I just eat healthier and watch my weight.
One other change is that I walk in a therapy pool for one hour a day, five mornings a week.

[Pup]

Dave, I’m with you on this one. I started walking gradually, maybe a block at a time. Now slightly over 1 year I am up to 2.5 miles every morning and most days have 3lb hand weights . Cut out all fast foods and mostly veggie diet. I have lost 105 lbs! I walk as soon as the sun is slightly up-can’t wait to get started. My generalized MG symptoms have slightly lessened but overall I feel so much better.

We got this!!!

[Scott McCormack]

I have had a 10 pound weight gain, probably due to the 80mg of prednisone I take daily.  As far as affecting my MG (moderate gMG ACHR-positive), I can’t quantify any differences.

[Claire M Walsh]

My weight has remained exactly the same throughout my whole first year of MG. I was told I would gain, but I only got the moon face from the 60 mg/day of prednisone . I am now down to 5mg and the moon face is gone!

[Michael Van Alstyne]

I found with azathioprine I lost my appetite and the food didn’t taste as it should. Also, the chewing problem didn’t help either. Long story short I’m down about 20 LBS. but slowly gaining some back.

[TheresaG]

Three years on Prednisone has added 20 pounds. 2 years 5mg, last year 13.5-20.

I definitely feel the added weight has impacted my flexibility, SOB, and joint pain, but who knows. I was 10 pounds underweight prior to the gain, so I would be very happy to lose the 10. The weight is in my torso, which never has been an issue for me.
need a new wardrobe, or maybe not as my social life is nonexistent, thank you MG. Lol

don’t think I’ll be off of prednisone ever, I am on IVIG, and as soon as we can stabilize the added prednisone, perhaps the azithioprine is something to look into if it does the same thing and same benefits.

opinion?

thanks for any input.

 

[Robert Davidson]

I had been losing weight rapidly for 18 months. About 75 pounds. From 245 to 168. My PCP did all scans to rule out cancer. But I continued with weight loss even eating full meals. When I went to the hospital with MG, my Neurologist asked if I have had to sit or raise up in bed at night for breathing comfort. I had been doing that for about the 18 months. He said that he suspected I had a mild case of MG for those 18 months because even a slight difficulty in breathing causes the body to massively (his term) burn calories so that’s why I was burning more calories than I was taking in. When he got my MG under control in the hospital, I began gaining weight and am back to 206.

[John Ulfelder]

I was diagnosed with bulbar MG a year ago. My symptoms were ptosis (droopy eyelids), which affect my vision (difficulty reading, with balance while walking, and unable to drive). No other weaknesses (legs, arms, breathing difficulty, etc.). Initially I was unable to chew and swallow, was hospitalized and had a feeding tube inserted (wonderful goop!) I lost 42 pounds. Due to swallow and speech therapy I regained my swallowing and eating functions. I now can eat and drink anything I choose. I have regained 14 pounds and my cardeologist is quite happy with my current lower weight and urged me to continue to maintain it. So far so good.

[David S]

Diagnosed in 2019 I weighed about 235#.  Feb 2023 I had gained a bit less than 50 lbs. and scaled in at 281.  We tried a variety of eating plans between 2019 and Feb 2023, including low carb and vegan plans with no positive results.  Prednisdone had a great impact on my weight as I always felt hungry. I continued to eat “normal” portions and my calorie intake far outweighed my exercise.

In Feb of this year we started a meal plan that is nationally advertised and am down to 244.  I plan on using this plan and get down to 225 and more after that.

The plan is easy to follow and eat what you order.  The meals are prepared and just use a microwave or frying pan to prepare the meals.  Fresh veggies and fruit are purchased at our local food store to supplement the provided meals.  When I get hungry now, I eat some veggies between scheduled meals and snacks.  This was new as I just ate veggies at dinner time.

The big challenge will be weaning off the Plan and cooking for ourselves again.

We are hopeful that we can continue to manage our weight for a healthier life.

Scott

 

[אורנה מונדשיין]

For myasthenia patients it is very important to eat healthy food. What I would like to ask if anyone had lately low hemoglobin due to the disease?

[S. R. Prasil]

MG did not seem to make a difference in weight, but my weight seems to make a difference in MG symptom/severity. A 30 lb loss three years ago was simultaneous to an improvement. After gaining that back, I have declined some. Three days ago, I began working towards losing again and eating a better group of nutrients in general. Has not been enough time to tell yet, but I will keep you posted.

 

[MikeS]

Basically, when my Prednisone goes up, so does my weight, and visa versa.  I find that I cannot control my hunger/cravings until the Prednisone is below 20mg/day, at which point I can start reducing my caloric intake and excess weight.  This cycle repeats with each flare-up I experience.

[Alan]

Hi all,

I was diagnosed in 2004, aftera major heart attack. I weighed 220, and worked in construction 7 days each week for years, Went through a million different medications and treatments, currently on IVIG, pyrostigmin, and asothiroprin. In February 2020 I crashed with covid, was admitted to hospital, intubation, with massive doses of steroids for many days. Spent 62 days total in hospital. All this time with no MG meds, Shaking like a leaf in a wind storm. I lost 70 pounds. My neurologist started meds and plasma exchange to stop the Shaking. Had 2 weeks of rehab to get my strength up enough to walk. Today I’m overweight, 310 pounds ,and diabetic and very tired all the time. Sleep is what I do, all the time 14 / 16 hours a day. The heat makes MG worse for me.

[lion]

Weight loss in the context of myasthenia gravis (MG) can be influenced by various factors related to the condition itself, its treatment, and the individual’s overall health. MG is an autoimmune neuromuscular disorder that can cause muscle weakness and fatigue, particularly in the muscles that control movement and breathing.

Here are a few points to consider:

1. Muscle Weakness and Activity: The muscle weakness and fatigue associated with MG can impact a person’s ability to engage in physical activity. This reduced activity level might contribute to weight loss if fewer calories are being burned.

2. Difficulty Swallowing and Eating: MG can affect the muscles involved in swallowing, leading to difficulties in chewing and swallowing food. This can result in decreased appetite and difficulty maintaining a regular diet, potentially leading to weight loss.

3. Side Effects of Medications: Some medications used to treat MG, such as corticosteroids or immunosuppressants, can have side effects that impact appetite and metabolism, potentially leading to weight changes.

[Ari Maayan]

I’m an 8 year passenger on the gMG Bus. Until about 4 months ago my weight remained stable, a little overweight but not unhealthily so. But 4 months ago I began losing weight at the rate of 1 pound a week, 16 pounds in 4 months. And it doesn’t matter what I eat regardless of the calories. I’m still in the healthy range but if it continues, let’s say for another 4 months it’s not going be in the healthy range. I am mildly disturbed at this point. But if it goes on I will not be amused. Several years ago I had Stage 4 esophageal adenocarcinoma. I had a 19 hour surgery and follow on treatment. I beat the odds. But during that time I lost 90 pounds in the space of a year. So I get a little freaked out when my weight slides and my diet is not arresting the slide.

[boo]

When I was first diagnosed with Ocular MG in February of 2024 my Neurologist put me on Pyridostigmine and oh my god the diarrhea was out of site , I called him he prescribed me Gylcopyrate 1mg 3 x a day that helped , but since February I’ve lost 40lbs. I usually make 3-7 trips to the bathroom daily , now my Neurologist wants to try me on prednisone.