Anyone else have multiple autoimmune diseases?

Posted by noelcs @noelcs, Sep 28 9:05am

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.

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

diverdown1 | @diverdown1 | Nov 30 9:52am

In reply to @judyresnick "my daughter has psoriatic rheumatoid arthritis, BECHETS, CRONES DISEASE, SHOGRANS OF THE EYES. fibre mialga," + (show)

Just curious as I have Long COVID, which mimics many other autoimmune diseases, do any of you have a lot of stress, anxiety or trauma in your backgrounds? I believe that the adrenal gland has a lot to do with inflammation which seems to be the cause of so many terrible autoimmune issues.

kayabbott | @kayabbott | Nov 30 10:31am

In reply to @judyresnick "my daughter has psoriatic rheumatoid arthritis, BECHETS, CRONES DISEASE, SHOGRANS OF THE EYES. fibre mialga," + (show)

I have celiac (no gluten), collagenous colitis, had reactive arthritis (dormant 35 years after methotrexate), and hypothyroid (not hashimotos). The collagenous colitis is controlled by managing stress (a major factor in autoimmune diseases), diet (low FODMAP) and low-dose Budesonide. Exercise is also very important. It is important to do your own research when you have complex medical issues; doctors tend to specialize on one aspect of a disease. That means peer-reviewed and other vetted research, not influencer blathering. It is useful to keep a food log; I'm sensitive to legumes as well as being GF. A dietician that specializes in your diseases is also good.

kayabbott | @kayabbott | Nov 30 10:35am

In reply to @diverdown1 "Just curious as I have Long COVID, which mimics many other autoimmune diseases, do any of..." + (show)

@diverdown1 I believe the autoimmune disease associated with the adrenal gland is named Addison's disease (what JFK likely had). I have not found any info on the adrenal gland causing inflammation, so links to research would be good. https://my.clevelandclinic.org/health/diseases/15095-addisons-disease

Colleen Young, Connect Director | @colleenyoung | Nov 30 10:55am

In reply to @judyresnick "my daughter has psoriatic rheumatoid arthritis, BECHETS, CRONES DISEASE, SHOGRANS OF THE EYES. fibre mialga," + (show)

@judyresnick, I moved your question to this existing discussion of the same title:
- Anyone else have multiple autoimmune diseases? https://connect.mayoclinic.org/discussion/anyone-else-have-multiple-autoimmune-diseases/

You can also use the group search to find discussions related to the conditions that your daughter has:
- Behcet's https://connect.mayoclinic.org/group/autoimmune-diseases/
- Sjogren's https://connect.mayoclinic.org/group/autoimmune-diseases/
- Rheumatoid arthritis https://connect.mayoclinic.org/group/autoimmune-diseases/
- Crohn's disease https://connect.mayoclinic.org/search/discussions/
- Fibromyalgia https://connect.mayoclinic.org/group/fibromyalgia/

Judy, this must be challenging for your daughter to manage. May I ask how old she is? How is she doing?

judyresnick | @judyresnick | Nov 30 11:04am

In reply to @colleenyoung "@judyresnick, I moved your question to this existing discussion of the same title: - Anyone else..." + (show)

@colleenyoung she is having a hard time. We are planning on getting her to the Mayo Clinic in January. In and out of Cedars’s. No answers, bleeding from trying Rinvok. She also has lupus

judyresnick | @judyresnick | Nov 30 11:41am

My daughter has bechets, lupus,crones,shogrens
Psoriatic reumatoud arthritis and Started at 5 years old with Graves’ disease that went away. All the rest are active Humera seemed to help with bechets and arthritis but not crones that one is a nightmare They can’t get her off steroids. It’s made her huge and two of the new drugs they are useing blew her up she was so allergic it put her in hospital She tried remecaid, made her bleed, totally allergic , rinvok, totally allergic. And one more I can’t remember

judyresnick | @judyresnick | Nov 30 12:01pm

In reply to @colleenyoung "@judyresnick, I moved your question to this existing discussion of the same title: - Anyone else..." + (show)

@colleenyoung she is 58 and has had a horrible year. We are planning to take her to Mayo Clinic hoping they will have answers or at least some way to get her body to stop attack g itself

ddn | @ddn | Nov 30 12:18pm

In reply to @rosiet1976 "Yes, I have psoriatic arthritis,psoriasis, fibromyalgia, IBD, demyelinating disease, sarcoidosis, and microscopic colitis. I have other..." + (show)

@rosiet1976 Yes, I have lichen schlerosis and tuberous sclerosis. I also suffer from various other ailments. Hang in there, darling. I wish you the best.

sarahmarie | @sarahmariem | Nov 30 4:12pm

Yes, at 77 years old, I've been diagnosed with Lupus, Sjogrens and Fibromyalgia. Also, I have asthma. At age 3, I contacted polio which put in an iron-lung. I was diagnosed with post polio syndrome at age 42. Its hard to know what is causing what and the appropriate treatment. Trying to figure it out takes time, energy, wasted medically appointments and money. I find it all dramatically takes away from my quality of life.

westwoman3698 | @westwoman3698 | Nov 30 4:42pm

In reply to @judyresnick "my daughter has psoriatic rheumatoid arthritis, BECHETS, CRONES DISEASE, SHOGRANS OF THE EYES. fibre mialga," + (show)

@judyresnick I have MS, degenerative disc disease, sarcoidosis in my eyes, and other major diseases. I’m 77. We treat MS symptoms with propranolol for severe tremors and a muscle relaxer for spasms. And Xiidra for my eyes. It’s supposedly not unusual to have multiple autoimmune diseases, once you have one. I’m interested in what Mayo has to tell you. Very best wishes.