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February 6, 2024
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Members shared a wide range of personal experiences in response to the question about whether avoiding steroids is a wise choice, with... Read more

Members shared a wide range of personal experiences in response to the question about whether avoiding steroids is a wise choice, with opinions varying based on individual health situations and how well each person tolerated the medication. Several members described significant side effects from long-term prednisone use, including weight gain, bone loss, hip replacements, cataracts, and fractures, while others found steroids essential during serious flares or crises. A recurring theme was the importance of being your own advocate, having honest conversations with your medical team, and exploring steroid-sparing options like Mestinon, IVIG, immunosuppressants, or biologics before committing to long-term steroid use.

A MGteam Member

Hi Sarah,
I have experienced some severe breathing issues from MG. Yes, it affects my voice at times. It usually gets worse as the day progresses - like most other symptoms from MG, use it and you lose it. Like chewing, breathing, holding up my big head, or repetitive arm or hand movements.
When my meds are working and I'm behaving (eating well, hydrate, exercise, get enough rest, easy on the partying, etc) my voice is back to near normal for the entire day.
When I was first diagnosed, my friend related something she read online. This article said it takes 2 or 3 years to get the meds right and come to some sort of stabilization. It was 3 years after my MG diagnosis for me to start really living again.
Hang tough!
Chas

February 10, 2024
A MGteam Member

Because of issues with my treatments ( long story) one I was put back on IVIG steroids were added. Hate the side effects and asked my doctor to get off them but he said for now they are absolutely necessary. So for now I’m sticking to what the doctors say. Hopefully once this regimen of IV IG is completed I will start with a more holistic approach.. If I to find a different doctor that is willing to investigate that possibility so be it. i am a little tired of the cure giving so many problems

February 23, 2024
A MGteam Member

I took steroids for 20 years as no other meds worked for me. It was a roller coaster of dosages. With IV Routuxin, not sure I’m spelling correctly my MG has been in total remission and no more steroids. I honestly forget I even have the disease and that is wonderful. I was dx when I was 42 and I am now 66.

February 22, 2024
A MGteam Member

I was on steroids for six years at one point. My primary and neurologist kept suggesting that I should stop them soon. I finally took it into my own hands and weaned myself off. It was one of the hardest things I have ever done. As a result of the steroids, I had developed cataracts, and osteoporosis, moon face among other side effects. It did increase my strength, and helped me maintain my position as an educator.

February 10, 2024
A MGteam Member

Also to add. sometimes men tolerate the steroids better than women. I can take them. My wife has joint and skeletal issues and really has problems with steroids. Go in with you eyes wide open. In my case, I was in such bad shape, the steroids were not an option! Do not get in that position. Seek help quickly if you have a quick decline.

February 9, 2024

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Wilmington, NC