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docmarcy21
@docmarcy21

Posts: 1
Joined: Feb 23, 2018

Pyoderma Gangrenosum

Posted by @docmarcy21, Wed, Sep 26 7:14am

Hello All!!

I have several autoimmune and chronic pain disorders : Rheumatoid Arthritis, Ulcerative Colitis, Fibromyalgia, MAC, spinal stenosis, poly Inflammatory Arthritis to name a few. I have just been diagnosed with Pyoderma Gangrenosum (PG). I live with chronic pain but this is the worst disease out of all of them!

I have open ulcerations all over my body. Some are open HOLES. They are not infected but are so painful and disgusting looking. I am on 80mg of prednisone and just had my first Remicade infusion last Thursday. That completely knocked me out: nausea, diarrhea,weakness…not a fun time. I also have a very compromised immune system from taking Rituxin. I’m a mess all around. I’m lucky to have a great care team consisting of members of Infectious Diseases, Dermatology, Rheumatology, Internal Medicine, Immunology and Pulmonary. I also have wonderful and supportive friends and family (and a magnificent husband)! What I don’t have is anyone who has PG. If you know someone who has it or if you have it I would love to hear from you. I would love to hear from a specialist who works with this disease. Before all of this hit I was a life coach, counselor, actor and educator. I have my doctorate in Clinical Psychology.

I’m happy to share pictures if you want to see. Thank you in advance!!!

REPLY

Hello @docmarcy21, Welcome to Connect. I did a search of Connect and found a few older discussions for Pyoderma Gangrenosum. I'm tagging members who have posted in the discussions to see if they may still be on Connect and can share information and treatments with you. @neauxless, @pattyboo, @teebird, @pamelaj831, @marieworon, @carolyoung, @nana0f1, @wood7306, are you able to provide any suggestions for @docmarcy21 ?

I did a search using Google Scholar (https://scholar.google.com/) and found an article that may be helpful:

Effectiveness of systemic treatments for pyoderma gangrenosum: a systematic review of observational studies and clinical trials*
https://onlinelibrary.wiley.com/doi/abs/10.1111/bjd.16485

@docmarcy21 are there any specific questions you are trying to get answered?

John

@docmarcy21 Welcome to this wonderful group of connect members I,m sorry I can't help as I'm unfamiliar with this disease but I will keep you in my prayers in hopes you get some relieve from PG ,before others reach out I wanted to say hi I will do some research and see what I can find John maybe able to locate some information.May God bless you

Hello @docmarcy21,

I'm so glad you've connected with @lioness and @johnbishop; I also thought you might be interested in reading about Mayo Clinic's care approach for Pyoderma Gangrenosum PG; I've copied some relevant information along with a link to the information page:

"Mayo has a long experience in diagnosing and treating this rare disease. Pyoderma gangrenosum was first identified by Mayo doctors more than 80 years ago. More recently, Mayo clinicians researched the extent to which pyoderma gangrenosum is misdiagnosed and the types of treatment that work best for the condition." https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/symptoms-causes/syc-20350386

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