1. < Autoimmune Diseases

Pemphigus Foliaceus

Posted by mylan @mylan, Nov 19, 2023

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?

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fessenbeck65 | @fessenbeck65 | Jan 16 10:18am
In reply to @johnbishop "Hello @fessenbeck65, I would like to add my welcome to Connect along with Pam @pb50. Just..." + (show)
@johnbishop

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.
https://connect.mayoclinic.org/search/?search=PMR+%2Bprednisone+taper

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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Yes, i’m trying to connect with others who have or pemphigus to see if they’ve had severe allergies to foods, grasses trees, dogs, cats, horses, pigs, etc. also if they have asthma and seizure disorder

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John, Volunteer Mentor | @johnbishop | Jan 16 1:07pm
In reply to @fessenbeck65 "Yes, i’m trying to connect with others who have or pemphigus to see if they’ve had..." + (show)
@fessenbeck65

Yes, i’m trying to connect with others who have or pemphigus to see if they’ve had severe allergies to foods, grasses trees, dogs, cats, horses, pigs, etc. also if they have asthma and seizure disorder

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You are not alone when it comes to severe allergies. Lots of discussions and comments if you want to look through the list - https://connect.mayoclinic.org/search/discussions/?search=severe+allergies

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fessenbeck65 | @fessenbeck65 | Jan 17 1:16pm
In reply to @mylan "This autoimmune disorder is so rare that only 1-5 of one million people acquire it….. it’s..." + (show)
@mylan

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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What did your dermatologist recommend for your treatment of Pemphigus?
I had treatment for 10 yrs for pemphigus foliaceus before it went into remission

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fessenbeck65 | @fessenbeck65 | Jan 20 6:30pm

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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