Pyoderma gangrenosum

I'm sorry to hear that you are suffering this rare and painful condition. Welcome to Mayo Connect, a community of people suffering from a wide variety of conditions and diseases. We share our experiences and try to help one another along the way. We are not medical professionals, but are willing to share what we have learned as we travel along, living as well as we can.

If you want to seek treatment at Mayo, here is the link: http://mayocl.in/1mtmR63

Here is some info from Mayo about the condition: https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/symptoms-causes/syc-20350386#: They try many non-surgical options first in this condition.

Please let me know what you decide to do.
Sue

Benign so far

Reference to a 5th dr and 5th diagnosis in 2 1/2 yrs. now it’s necrobiosis lipoidica. That ties my long term type 1 diabetes mellitus with Hashimoto (long term hypothyroidism. She flipped from all steroids all the time to doxycycline & tacrolimus. Mastectomy is ruled out.

After 2 years of missed diagnosis, 3 months ago after 3 debridements that made the wounds on my legs worse, I was finally diagnosed with pyomera gangrenosum. Is there any one that has this rare disease

I was just diagnosed with pyomera gangrenosum and have large painful wounds on both legs that go from my ankle to just above my calfs is there anyone that has this autoimmune disease

Welcome @married40years, I'm tagging fellow member @aunkey who was diagnosed with pyomera gangrenosum after a lengthy diagnosis journey.

Who and how was your diagnosis finally made? What is the treatment plan going forward?

Colleen: I have a journal. Can abbreviate. Pix even.
What’s your interest, if you don’t mind, before I send?

Thank you for your response I have unknowingly been dealing with my leg wounds for 2 years. Just found out positive diagnosis 2 months ago. I have had 3 debridements with skin grafts and every time it failed before proper diagnosis. I am on immune supresent drugs and steroids. Suppose to go for debridement tomorrow

I’m not home but when I get a minute I’ll give you the history. It all started 5/19/19 with 2 white dots on L nipple, same breast as cancer ‘07. I feared metastatic but it was a bacterial infection.

Colleen - I just went to start of thread and see married 40 yrs.
Will be back with more.