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another_keesh
@another_keesh

Posts: 3
Joined: Mar 28, 2017

Pemphigus Vulgaris

Posted by @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.

REPLY

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

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?

@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.”

“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”.

Thanks, I will forward this on to my relative.

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