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Pemphigus Foliaceus

Autoimmune Diseases | Last Active: Jan 20 6:30pm | Replies (14)

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I was diagnosed with Pemphigus Foliaceus when I was 10 yrs old in 1975 , I had been sick since 8 yr old. I was a solid sore and in pain. They started me off on 100mg of prednisone everyday. Would titrate prednisone down to 20 mg, then would break out again n prednisone dose would go up again. This went on for 5 1/2 years. Then they added methotrexate to the prednisone regimen. After 5 yrs of prednisone and methotrexate, I was in remission!!
I had seizures due to the Pemphigus, and still take phenobarbital for that. I’ve had multiple health issues due to long-term steroid use and methotrexate. Severe osteoporosis at the age of 35, lung issues, glaucoma, seizure disorder, severe allergies (anaphylaxis ) including food, allergies, which still haunt me. But I’m so thankful that I’m still in remission at age 58!

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Replies to "I was diagnosed with Pemphigus Foliaceus when I was 10 yrs old in 1975 , I..."

I had never heard of your condition and it sounds dreadful! You might find sympathy and useful intel on the PMR (polymyalgia rheumatica) board because they too live with long periods of prednisone and attempts to wean it down slowly, only to have to increase it again. To my knowledge they don’t typically add in methotrexate but I may not be aware. I took MTX for years before it began to impact my liver and I had to stop.

I wish you well!