I have been diagnosed with a rare Autoimmune Disorder by the name of Pemphigus Foliaceus. Does anyone have any experience with this disorder and have any tips for me medically or nutritionally and/or want to share your experience with me?
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Sorry I am not familiar with it.
@mylan Welcome to Mayo Clinic Connect. I’m glad you found us. I, too, have not heard of this autoimmune disease before so i included what Mayo Clinic says about it.
Let’s hope some members are familiar with this and will join the conversation.
Are you currently under treatment for this pemphigus foliaceus?
This autoimmune disorder is so rare that only 1-5 of one million people acquire it….. it’s the kind of special you don’t want to be.
Yes…. I was diagnosed and treated by a small town dermatologist for close to a year. My condition has gotten progressively worse so they referred me to a Dermatologist represented by KU Medical Center of Olathe KS. I am sitting in the waiting room waiting to be seen as we speak.
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@mylan I’m so glad that you were sent to a specialist! Will you let me know everything you learn?
Wow - not the lottery you want to win! Autoimmune conditions are mysterious and frustrating -
Not to mention illusive and painful. But academically I look forward to learning what you learned.
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!
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!
Thank you. I will look into poly myalgia rheumatica.
I hope your liver functions got better!
I wish you well also!
Hello @fessenbeck65, I would like to add my welcome to Connect along with Pam @pb50. Just wanted to touch bases to provide a search link of Connect for "PMR + prednisone taper". You can tweak the search terms to find others with similar conditions.
It is really great to hear that you are still in remission after such a long bout with Pemphigus Foliaceus. Do you mind sharing how you found Connect? Are you trying to find some answers or others with similar symptoms?
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