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    • #18023
      Michelle Gonzaba
      Moderator

      When I was first diagnosed with MG, one of my doctors told me that if I lost some weight, I would be able to handle my disease better. At the time, I was more concerned with dealing with my weakness so I ignored the comment about my weight.

      Since then, my weight (like most people) has gone up and down but I’m not sure if it’s affected my MG.

      Have you lost or gained weight while having MG? Did it have an effect on the severity of your weakness?

    • #18042
      Dave Hall
      Participant

      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.

    • #18047
      Scott McCormack
      Participant

      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.

    • #18048
      Claire M Walsh
      Participant

      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!

    • #18049
      Michael Van Alstyne
      Participant

      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.

    • #18059
      TheresaG
      Participant

      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.

       

    • #18082
      Robert Davidson
      Participant

      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.

    • #18115
      John Ulfelder
      Participant

      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.

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