Anyone else have multiple autoimmune diseases?

Posted by noelcs @noelcs, Sep 28, 2025

I have Addisons, Hypothyroidism, Sarcoidosis, Myasthenia Gravis and Dermatomyositis. Also, Kidney disease 3a, and liver disease. Good news is……I don’t seem to have the worst. Are scenario of any of them. My biggest problem is the lungs. I still golf some and the breathing sometimes interferes. Overall, I consider myself lucky that I’m still here……because I’ve had some close calls.

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Profile picture for 77smith77 @77smith77

I have Myasthenia gravis, Churg-Strauss Syndrome, and Pachymeningitis. 80 y/o. Treated by 17 specialties. Drove one of my race cars last year, a bit slower now but still fun. Treated at the Philadelphia VA and Penn Medicine.

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@77smith77 My wife has had MG symptoms for years, breathing and swallowing issues. Diagnosed last Sept, but not medicated well, plasma exchange lately shows improvement. Vyvgart is considered an option and you are identified as experienced in MG management. What do you think of Vyvgart if you used it? jhh

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Profile picture for jhhuis @jhhuis

@77smith77 My wife has had MG symptoms for years, breathing and swallowing issues. Diagnosed last Sept, but not medicated well, plasma exchange lately shows improvement. Vyvgart is considered an option and you are identified as experienced in MG management. What do you think of Vyvgart if you used it? jhh

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@noelcs,
You are lucky.
I also have Addison’s disease, hypothyroidism, kidney disease, antiphospholipid syndrome (APS)/lupus, von Willebrand disease type 2, and a Factor V Leiden mutation.
I’ve come close to an Addisonian crisis twice, but fortunately, I had my emergency kit with me both times.

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Tried coming today Yes, I have Hashimoto's, and we taught arthritis and Sjogren's disease

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I have MS, sarcoidosis in left eye and right lung, Hep C, and other stuff. Have tried to cut down on Doc visits because they continue to add disease after disease. Probably not smart on my part but it’s an act of mental health preservation.

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Profile picture for htolan @htolan

@noelcs My nodules are from bronchiectasis and they are starting to make headway with it. Things may get better.

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@htolan Hi! When u say, "They are starting to make headway with it," what are they doing to help it? I struggle with Bronchiectasis & am concerned about permanent damage. Sjogren's Dysautonomia MCA (several autoimmunediseases). I appreciate anything u can share. It's hard but it certainly helps to know God. Hope things do get better with u.

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Profile picture for corinnee @corinnee

Raynaud's, Limited Scleroderma, Mixed Connective Tissue Disease, Lupus, and Fibromyalgia. On top of that, Chronic Kidney Disease (starting GFR was 39 yet with dietary changes I've gotten it to high 60's). Biggest issue is fatigue. I am chronically tired. And sleep is not restorative. You said your breathing interferes with golf. Have you had a breathing test? I get one every 5 years or so just in case.

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@corinnee I’m very interested about your diet changes that improved your GFR. I have stage 3b and my scores are always 39 and lower.

Sue Noel

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Profile picture for h16027 @h16027

@htolan Hi! When u say, "They are starting to make headway with it," what are they doing to help it? I struggle with Bronchiectasis & am concerned about permanent damage. Sjogren's Dysautonomia MCA (several autoimmunediseases). I appreciate anything u can share. It's hard but it certainly helps to know God. Hope things do get better with u.

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@h16027 Which of my many diseases was I talking about?

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