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Wed, Jan 9 6:27am · Rheumatoid Arthritis (RA) - Introduce yourself and meet others in Autoimmune Diseases

I was diagnosed with RA in my mid fifties. I started on methotrexate which worked well, but negatively impacted my liver. I was switched to Enbrel and did well for several years. Then during a stressful period my Vectra D score was elevated. The doc switched me to Humira My Vectra continued to be elevated so he trie Orencia. That did not work either. I was then given actemra. Aftrer three infusions I developed a rash. At that time I was retested for TB and was found to have latent TB. I was treated for that and then found to have MRSA. I was treated for that. I was off of meds for two years I am back on Enbrel and it is working quire well. RA is difficult and painful. I have several other autoimmune disease that are challenging me right now….Pemphigus Vulgaris in the esophagus and alopecia areata. Good luck. I hope Actemra works for you.

Mon, Jan 7 11:06am · Multiple! autoimmune diseases in Autoimmune Diseases

Yes. It was negative.

Mon, Jan 7 11:05am · Multiple! autoimmune diseases in Autoimmune Diseases

Yes that test was done when I first presented with Pemphigus. It was negative. Also my rheumatologist screened and felt that the test was accurate.

Sun, Jan 6 9:06am · Multiple! autoimmune diseases in Autoimmune Diseases

Sure. I was diagnosed with juvenile myxedema at age 12. At that time I was hospitalized for a week while they began treatment with thyroid. At age 27 I was diagnosed with ovarian failure. In my 40’s I began to have problems with lichen planes. My 50,s brought RA and Shougruns. I was started on methotrexate, but had liver issues. I was then started on Enbrel which managed fairly well for a few years. Then my rheumatologist began switching meds due to an elevated Vectra score. After trying Humira and Orencia, he switched me to Actemra infusions. After my third infusion, I developed a rash that was very resident to meds. My dermatologist referred me to a specialist who diagnosed me with RA in the skin. In the interim I changed rheumatologist. My new rheumatologist retested me and found that I had latent TB. Following treatment for that I was referred to an ENT for sinus issues. After surgery, I had difficulty swallowing. The ENT referred me to a gastroenterologist who attempted to dilate a strictur. She gave up after three tries and referred me to a specialist. He performed several dilatation (25) before diagnosing esophageal Pemphigus vulgaris and referring me back to rheumatology. He stated that he did not treat it and referred me to dermatology. She recommended Mayo. The team there recommended Rutuxin. I’m still having issues with the stricture and pemphigus, but I’ve been able to go 3 months without dilatation. Prior to that I could only go 3 weeks. Hopefully with time the stricture and esophageal inflammation will resolve. My most recent autoimmune is alopecia areata. Dealing with hair loss has been stressful. I’m hoping that with treatment it will grow back.

Sun, Jan 6 4:34am · Multiple! autoimmune diseases in Autoimmune Diseases

Like you I have multiple autoimmune diseases. When I sought treatment at Mayo in Rochester in the doctors felt that all of mine would stay in the endicrine system. Not so. I now have RA and all of its variants, alopecia areata. And pemphigus. I’m still developing them at age 70.