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 swalex @swalex

Yes, @bhgrigsby, I was initially diagnosed with IGDA (also called Ackerman syndrome), but the later diagnosis was Stevens–Johnson syndrome (SJS). I was first treated with corticosteroids and then switched to methotrexate. My symptoms have improved, though I still have some residual IGDA.

At the time, my biggest challenge was finding soft clothing that didn’t irritate my skin even further.

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@swalex
Thank you for your kind reply. I was on methotrexate (Rasuvo) for about 8 1/2 years. When the plaques started surfacing, the rheumatologist believed that the methotrexate was possibly causing the IGD. (toxicity). He then changed my prescription from methotrexate to hydroxychloroquine. That was not good, after a few weeks, the plaques starting surfacing all over my legs, thigh, torso and lightly on my arms. Now, I’m on the second month of getting an ORENCIA (a biologic) infusion once a month. The progress has been minute my arm s are better but the rest of the plaques are almost exactly the same…. a few look like they’re getting lighter from the center outward. I’m praying the progress is better as I continue the ORENCIA treatment.
Thank you for your input. I really appreciate it. Wishing you good health and total remission.

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I have Rheumatoid Arthritis, Sjogrens, Behcet’s, and Raynauds.

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I really owe everyone on the discussion group a giant thank you. Thank you for having positive attitudes throughout your good days and bad ones. I really needed to hear you joke and say, “life is good! What are a few more AI diseases!” I’m going to set a new goal for myself: to work on my attitude every day! Becky

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Right now, turning 70 next month, I'm dealing with what I guess are normal old age stuff, perhaps with some side effects from the MS thrown in. Arthritis has deteriorated my bones, probably with the help of our dark angel prednisone. Two knees replaced in the past 10 years. Now a hip replacement occurring late next month. My back has a stenosis on both ends of the spine, and four vertebrae that are messed up.... hard to know if any of it is related to the MS or not.

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Profile picture for bhgrigsby @bhgrigsby

@swalex
Thank you for your kind reply. I was on methotrexate (Rasuvo) for about 8 1/2 years. When the plaques started surfacing, the rheumatologist believed that the methotrexate was possibly causing the IGD. (toxicity). He then changed my prescription from methotrexate to hydroxychloroquine. That was not good, after a few weeks, the plaques starting surfacing all over my legs, thigh, torso and lightly on my arms. Now, I’m on the second month of getting an ORENCIA (a biologic) infusion once a month. The progress has been minute my arm s are better but the rest of the plaques are almost exactly the same…. a few look like they’re getting lighter from the center outward. I’m praying the progress is better as I continue the ORENCIA treatment.
Thank you for your input. I really appreciate it. Wishing you good health and total remission.

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@bhgrigsby
I had to discontinue methotrexate (MTX) due to excessive hair loss and bleeding. It also appears that MTX may interfere with von Willebrand factor (VWF) type 2, which I have also.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

I really owe everyone on the discussion group a giant thank you. Thank you for having positive attitudes throughout your good days and bad ones. I really needed to hear you joke and say, “life is good! What are a few more AI diseases!” I’m going to set a new goal for myself: to work on my attitude every day! Becky

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@becsbuddy
I have a very hard time being positive. I've got sjögren's syndrome, Sleraderma, Raynouds,skin cancer thats always being treated somewhere on my face and head. I've so many symptoms that are always so busy on me. Pain is number 1, I've Fibromyalgia too. I am being treated for Cancer now in three places. 2 places in my left lung and it was deflated totally and full of cancerous fluid. They just removed the fluid off my lung and its starting to inflate again. Coughing terribly and getting sick. I'm weak and I am miserable 😭. It's what I want to do a lot , but I don't. I try to keep postive as they start chemo and radiation next week. I have pain in my left jaw to my ear from sjögren's. It's the salivate glands that are inflamed in there. I pray that stops soon! My other place of cancer is in my pelvic area in the middle of a lot of blood vessels and they can't operate on either of my cancer masses. They can only kill them. I'll be having chemo for a long time along with maintenance I'm sure. I've had 22 operations already and really don't want anymore ! Having Connective Tissue Disease can cause cancer 4x higher risk than another. I've had many blood vessels break in my brain and cause ischemic strokes in my hemispheres. I take meds like I have a heart issue. No high BP and my heart is fine so far. They can't stop them really. I have been lucky to not have had any in a year now though. I have a Neurologist and Ruymatolgist at John Hopkins I live about about 2.5 hours away from them , so not bad drive. They are the best around. I also have an oncologist there, but doing treatment for cancer where I live with his instructions being done. You take care!!!

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My reply went you the person under you. I'm sorry.
Nadine

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Profile picture for taylor05 @taylor05

@becsbuddy
I have a very hard time being positive. I've got sjögren's syndrome, Sleraderma, Raynouds,skin cancer thats always being treated somewhere on my face and head. I've so many symptoms that are always so busy on me. Pain is number 1, I've Fibromyalgia too. I am being treated for Cancer now in three places. 2 places in my left lung and it was deflated totally and full of cancerous fluid. They just removed the fluid off my lung and its starting to inflate again. Coughing terribly and getting sick. I'm weak and I am miserable 😭. It's what I want to do a lot , but I don't. I try to keep postive as they start chemo and radiation next week. I have pain in my left jaw to my ear from sjögren's. It's the salivate glands that are inflamed in there. I pray that stops soon! My other place of cancer is in my pelvic area in the middle of a lot of blood vessels and they can't operate on either of my cancer masses. They can only kill them. I'll be having chemo for a long time along with maintenance I'm sure. I've had 22 operations already and really don't want anymore ! Having Connective Tissue Disease can cause cancer 4x higher risk than another. I've had many blood vessels break in my brain and cause ischemic strokes in my hemispheres. I take meds like I have a heart issue. No high BP and my heart is fine so far. They can't stop them really. I have been lucky to not have had any in a year now though. I have a Neurologist and Ruymatolgist at John Hopkins I live about about 2.5 hours away from them , so not bad drive. They are the best around. I also have an oncologist there, but doing treatment for cancer where I live with his instructions being done. You take care!!!

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@taylor05 you will be in my heart today! Your struggle is real, and thank you for sharing your story. Chronic illnesses and pain are vastly misunderstood, and our endurance and strength tested in more ways than we could ever have guessed.
Continue your path, this journey, knowing we share your pain and confusion. Only those who experience such tests, treatments and chaos (hopefully their medical team/friends/family too) can even begin to comprehend mentally, much less physically.
My teaching hospital is a 2 hr. drive. The 4 hour trip and tests, etc., is draining. Yet I am so blessed and grateful for the six Specialty areas who organize and work together to provide my care. Also my supportive spouse, he's a trouper, these long years of illness shaping our lives so unexpectedly.
May you feel at least a brief moment of peace in the midst of your day today!

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Profile picture for ptz71 @ptz71

@taylor05 you will be in my heart today! Your struggle is real, and thank you for sharing your story. Chronic illnesses and pain are vastly misunderstood, and our endurance and strength tested in more ways than we could ever have guessed.
Continue your path, this journey, knowing we share your pain and confusion. Only those who experience such tests, treatments and chaos (hopefully their medical team/friends/family too) can even begin to comprehend mentally, much less physically.
My teaching hospital is a 2 hr. drive. The 4 hour trip and tests, etc., is draining. Yet I am so blessed and grateful for the six Specialty areas who organize and work together to provide my care. Also my supportive spouse, he's a trouper, these long years of illness shaping our lives so unexpectedly.
May you feel at least a brief moment of peace in the midst of your day today!

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@ptz71
Thank you so much and my husband is a rock and trooper.. lol 😆 anything I need or want he's doing it. He's 73 this month too. I'm 67. He stays in fair shape though. I'll give him that. He plays golf when he can each week. Time with his friends are needed. I'm just not hanging with my friends right now with this Cancer issue right now. Coughing way to much anyway. Feel terrible.. 😆 I will soon. They all keep me up! I'm glad you have light in your life! It helps out so much! My daughter is a PA and had us move in her inlaw quarters a few years ago. Sold our home. It works great. Especially now. She's very involved. Dr's talk to her and James and they tell me. Put anything in my calendar needed. I have cognitive issues since strokes and connective tissue disease can cause it too. I am doomed to that. Thank you for your story too. May it all go well for you!!

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Profile picture for taylor05 @taylor05

@ptz71
Thank you so much and my husband is a rock and trooper.. lol 😆 anything I need or want he's doing it. He's 73 this month too. I'm 67. He stays in fair shape though. I'll give him that. He plays golf when he can each week. Time with his friends are needed. I'm just not hanging with my friends right now with this Cancer issue right now. Coughing way to much anyway. Feel terrible.. 😆 I will soon. They all keep me up! I'm glad you have light in your life! It helps out so much! My daughter is a PA and had us move in her inlaw quarters a few years ago. Sold our home. It works great. Especially now. She's very involved. Dr's talk to her and James and they tell me. Put anything in my calendar needed. I have cognitive issues since strokes and connective tissue disease can cause it too. I am doomed to that. Thank you for your story too. May it all go well for you!!

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@taylor05 great to read your post this morning! My husband James is starting to find balance between meeting my needs while continuing to make time and find energy for his own. I realize now how 40+ years of marriage interrupted by my roller coaster health has shaped us, made us stronger and will guide us in these "golden years" ! Lol!
My best thoughts are with you today! Hope there are moments of peace in the storm of your life, and may you take comfort (as we all do) in the support and open discussions we have here!

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