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 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, you may be interested in the discusions in this group:
- MAC & Bronchiectasis Support Group https://connect.mayoclinic.org/group/mac-bronchiectasis/

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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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@jhhuis I am currently on Vyvgart and am doing well on it. I had had Solaris prior to it without benefit. I know fellow patients in the IV center who have done well on both. My own experience was better with Vyvgart. I saw improvement in a few days after the first IV. Also, no side effects with the Vyvgart.

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I was diagnosed with MS, Relapsing/Remitting in 2000. I'm still ambulatory, walk my dog, garden, all kinds of activities. I'm turning 70 next month. Was on Avonex for about 18 years. I tell people my experience is 1/3 medication, 1/3 attitude, 1/3 luck.

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Profile picture for angus100 @angus100

I was diagnosed with MS, Relapsing/Remitting in 2000. I'm still ambulatory, walk my dog, garden, all kinds of activities. I'm turning 70 next month. Was on Avonex for about 18 years. I tell people my experience is 1/3 medication, 1/3 attitude, 1/3 luck.

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@angus100 yes, autoimmune diseases, the gift in many guises that loves to share...
Glad to know you're doing your best to thrive. I too have multiple diagnoses, newest is Giant Cell Arteritis. Also, age 71, determined to live til my last breath! My advice? Live in the present, continue learning and recognize every day as the gift it truly is....

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I also have multiple autoimmune diseases. Cogans syndrome, autoimmune hepatitis, primary biliary cholangitis, hypothyroidism, idiopathic (poly-something) purpera. I’ve been on many medications, too much prednisone causing many side effects. But I am currently am enjoying my life and am not going to complain too much.

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Profile picture for westwoman3698 @westwoman3698

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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@westwoman3698
I agree with you. They keep finding new conditions/diagnoses. At some point your mental health and outlook needs to be a priority. I have hx of ITP, CVID, PBC and have been living with extranodal malt lymphoma for 3 years.
I try hard not to let my health issues define or dictate my everyday life. I am 72 and have much more I want to do. Peace to you!

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Profile picture for meo @meo

@westwoman3698
I agree with you. They keep finding new conditions/diagnoses. At some point your mental health and outlook needs to be a priority. I have hx of ITP, CVID, PBC and have been living with extranodal malt lymphoma for 3 years.
I try hard not to let my health issues define or dictate my everyday life. I am 72 and have much more I want to do. Peace to you!

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@meo And for you too. I guess if life was supposed to be easy we’d call it “vacation.” But darn, it would be nice to have a break once in awhile! Best wishes.

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Profile picture for lmpa65 @lmpa65

I also have multiple autoimmune diseases. Cogans syndrome, autoimmune hepatitis, primary biliary cholangitis, hypothyroidism, idiopathic (poly-something) purpera. I’ve been on many medications, too much prednisone causing many side effects. But I am currently am enjoying my life and am not going to complain too much.

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@lmpa65 yes! Found that the complaining/agonizing path i chose didn't serve me well. Prednisone, its effects both useful and not so much, endured as well! Yet here we are finding joy in little things, days which give us hope, friends/family/medical support, spiritual support....alive with each new day in whatever way it comes despite our mixed-up yet functioning bodies!
Keep it up, i wish you well!

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