Multiple Auto-immune Diseases ?

Posted by annelia @annelia, Aug 11, 2024

Hello .. I am new here so diving right in looking for others that have multiple auto-immune diseases .
Addison's, RA, fibromyalgia, tinnitus, alopecia, degenerative disc disease, A-Fib, MVP minor, osteo- arthritis, diverticulosis, Raynaud's
It just seems to go on and on but some how ? it would help to know if there are other people out there that have so many tag along diseases. Strangely enough I had thyroid problems, hypothyroid, for over 18 years and suddenly it just STOPPED .. had been taking Synthroid all that time and then the endocrinologist said I could stop taking the Synthroid, boom, just like that. How weird is that ?
In any case .. if anyone is out there that has or is experiencing anything similar please reply .. Is Addison's (Primary, auto-immune) really that rare ? I've only had one crises so far, 2010 and wow, I didn't realize how dangerous that was (caused by gastro bug) Thanks for any replies.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for Becky, Volunteer Mentor @becsbuddy

@nativedyme Welcome to Mayo Clinic Connect, Kay! I don’t quite get the ‘fiber y’. Code for something? Do you have anything special that you want to ask the members?

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@becsbuddy

Hi Becky and All, I am new to the group with scleroderma, arthritis, Raynaud, Hashimoto's, and a history of breast cancer 25 years ago. 9 months ago I had autologous stem cell transplant for scleroderma. So far, I see few signs of improvements with skin and joints, but Raynaud got worse through radiation and chemo. My question is: did anyone have CAR T treatment for scleroderma, lupus, arthritis, or any other autoimmune disease? There is promising research going on, but I am not aware of any approved CAR T for autoimmune diseases. Any insight is appreciated.

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Profile picture for Alta Net @altabiznet

@becsbuddy

Hi Becky and All, I am new to the group with scleroderma, arthritis, Raynaud, Hashimoto's, and a history of breast cancer 25 years ago. 9 months ago I had autologous stem cell transplant for scleroderma. So far, I see few signs of improvements with skin and joints, but Raynaud got worse through radiation and chemo. My question is: did anyone have CAR T treatment for scleroderma, lupus, arthritis, or any other autoimmune disease? There is promising research going on, but I am not aware of any approved CAR T for autoimmune diseases. Any insight is appreciated.

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@altabiznet I found this one discussion that mentions CAR T therapy for autoimmune diseases. It may not give you any good information but it’s a start.
https://connect.mayoclinic.org/comment/1236363/
You might also look up Autoimmune Association to see if they have any info. I’ll keep my eyes and ears open in case I hear or see something.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@altabiznet I found this one discussion that mentions CAR T therapy for autoimmune diseases. It may not give you any good information but it’s a start.
https://connect.mayoclinic.org/comment/1236363/
You might also look up Autoimmune Association to see if they have any info. I’ll keep my eyes and ears open in case I hear or see something.

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@becsbuddy

Hi Becky, thank you for sharing. I will check Autoimmune Association as well. For anyone interested, there is one ongoing CAR T study conducted by Brystol Myers Squibb that I have found for multiple autoimmune diseases posted on BMS website study # NCT05869955. It comes up in the search. Trial ID CA061-1001 | NCT05869955
A Study of CC-97540, CD-19-Targeted Nex-T CAR T Cells, in Participants With Severe, Refractory Autoimmune Diseases (Breakfree-1)

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Profile picture for Alta Net @altabiznet

@becsbuddy

Hi Becky, thank you for sharing. I will check Autoimmune Association as well. For anyone interested, there is one ongoing CAR T study conducted by Brystol Myers Squibb that I have found for multiple autoimmune diseases posted on BMS website study # NCT05869955. It comes up in the search. Trial ID CA061-1001 | NCT05869955
A Study of CC-97540, CD-19-Targeted Nex-T CAR T Cells, in Participants With Severe, Refractory Autoimmune Diseases (Breakfree-1)

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@altabiznet, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you: http://www.bmsclinicaltrials.com/

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Hi, I’m new here too! I’m 58 and over the past 10 years I’ve been diagnosed with multiple autoimmune diseases and other health issues, including rheumatoid arthritis, fibromyalgia, tinnitus, alopecia, degenerative disc disease, Sjögren’s disease, polymyalgia rheumatica, osteoarthritis, and diverticulosis.

It all started in 2015 after an allergic reaction to metformin, which led to pancreatitis and the simultaneous diagnosis of RA and Sjögren’s. Since then, it’s been a long journey with thyroid nodules, a goiter, and mysterious symptoms that took persistence and self-advocacy to get answers for. For example, I had to push doctors to refer me to clinical trials three hours away—no one thought anything serious was wrong—until the Whipple procedure revealed PanIN 3. My surgeon told me, “Tammy, praise God you had it done, because it was PanIN 3.”

I’ve learned that being proactive and persistent is often necessary with complex autoimmune and pancreatic issues. My hair has thinned from alopecia, I’ve had an umbilical hernia, and polymyalgia rheumatica, and the list goes on. It’s exhausting, but hearing others’ experiences here helps a lot.

I’d love to hear from others who are navigating multiple autoimmune conditions too—sharing experiences and tips really helps!

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I hear you loud and clear. At 40 8 was diagnosed with Multiple Sclerosis. Then diabetes. Hypertension. Osteoarthritisof the spine with radiculopathy, fibromyalgia. Degenerative joint disease of the thoracic spine. Aortic atherosclerosis. Bilateral carotid artery stenosis. Migraine disease. Nonalcoholic Fatty Liver Disease. Spondylosis. Osteopenia. Sleep Apnea. Hyperlipidemia. Nuclear Sclerosis. Hemorrhoid disease (+ surgery). Collagenous Colitis. And a few more. Very frustrating, indeed. I hear you, understand you, and pray for you. 🫂

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Wow… you have been carrying so much, and I truly appreciate you sharing all of that with me. I’m so sorry you’ve had to face so many difficult diagnoses. It really is overwhelming and frustrating at times, and it helps to know someone else understands that feeling.

I’m right there with you, and I’m praying for you too. Thank you for reaching out with such kindness — it means more than you know. 💛

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