Pemphigus Vulgaris

Posted by another_keesh @another_keesh, Mar 28, 2017

I have a relative who has the fatal disease, Pemphigus Vulgaris.
He/she is on 5 mg. of Prednisone every other day.
I am concerned when Prednisone will no longer be effective.
Mayo is fantastic at unusual diseases.
Does anybody know of any research or other treatments?
Can anybody suggest a specialist at a Mayo campus?
Thanks in advance.

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Hello @another_keesh, welcome to Connect. I don't have any knowledge on pemphigus vulgaris but thought I would give you a few places to start until someone more familiar joins your discussion. I would suggest calling Mayo Clinic to see if they are able to setup an appointment with a specialist.
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63. You can find out more about billing and insurance at Mayo Clinic here: http://mayocl.in/2kk2hF8

Mayo Clinic has some information on pemphigus, including treatments, medications and more here:
http://mayocl.in/2ndjD7i

The NCBI website has a page "Management of pemphigus vulgaris: challenges and solutions"
http://bit.ly/2o1M10U

Thank you for being an advocate for your relative.

John

REPLY

Hello @another_keesh,

I'd like to add my welcome, and also thank @johnbishop for the guidance and some great information.

Although not to be confused with pemphigus vulgaris, you may wish to view the following discussion on Bullous pemphigoid, which is a similar blistering skin condition: http://mayocl.in/2o7pS1r
I hope @earljohnson5030, and @gonefishinmt will return to give you some insight, perhaps about their experiences with Prednisone, as well.

Since your relative may most likely see a dermatologist, I thought you might like to know that the Mayo Clinic dermatology department in Minnesota offers one of the nation's few comprehensive inpatient treatment programs for managing complex dermatologic problems.

@another_keesh, what were the symptoms, and when was your relative diagnosed? Besides the Prednisone, is there anything else he/she does to manage the pain and discomfort?

REPLY
@kanaazpereira

Hello @another_keesh,

I'd like to add my welcome, and also thank @johnbishop for the guidance and some great information.

Although not to be confused with pemphigus vulgaris, you may wish to view the following discussion on Bullous pemphigoid, which is a similar blistering skin condition: http://mayocl.in/2o7pS1r
I hope @earljohnson5030, and @gonefishinmt will return to give you some insight, perhaps about their experiences with Prednisone, as well.

Since your relative may most likely see a dermatologist, I thought you might like to know that the Mayo Clinic dermatology department in Minnesota offers one of the nation's few comprehensive inpatient treatment programs for managing complex dermatologic problems.

@another_keesh, what were the symptoms, and when was your relative diagnosed? Besides the Prednisone, is there anything else he/she does to manage the pain and discomfort?

Jump to this post

Here is the response from my kin:
"it started out that my gums were white.
pain in my mouth. could hardly eat.
I use gel in my mouth & dexamethasone rinse twice a day. I am the first one to get this as far as I know. No one is alive to tell me
otherwise."

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"The interventions which appear promising, but will require further evaluation include adjuvant mycophenolate mofetil (MMF), azathioprine, intravenous immunoglobulins (IVIG), sulfasalazine and pentoxifylline, infliximab, epidermal growth factor and pimecrolimus."
http://link.springer.com/article/10.1007/s40265-015-0353-6 Zhao, C. Y., & Murrell, D. F. (2015). Pemphigus vulgaris: an evidence-based treatment update. Drugs, 75(3), 271-284. A useful starting point for finding up-to-date information on medical therapies is to use "google scholar".

REPLY

Thanks, I will forward this on to my relative.

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