Pyroderma Gangrenosum or something else

Posted by toothgirl @toothgirl, Feb 26 12:13am

Hi everyone my name is Renee and just new to the group and happy to be here. I got a tattoo on my ankle foot area. As you can see the bottom right photo is my tattoo I got in September 18 and on the 21st it didn’t feel right. On the 25 th I went to the urgent care doctor and he thought it was an infection put me on kelflex antibiotics. It only got worse so went to dermatologist and they thought I was having an allergic reaction to red ink dye. They sent me up to SLC to see a dermatologist who has a laser which makes pin holes in your skin and extracts the ink. After the procedure my leg exploded with ulcers and tiny red bumps that made craters in my skin. The Derain the town I live in felt it was PG because he knew I had IBS and my mom and aunt both have IC and illeuostomy bags. So I also have the genetic component. So I wanted to get this figured ASAP because I am in so much pain. The burning and stabbing is sometimes unbearable. So I went to the university of Utah hospital to see a dermatologist who specializes in these kinds of diseases. She took 2 biopsies and did a large panel of blood work. The results of the biopsies showed no infection or inflammation. One of my blood panel was high in ANA which is an auto immune disease. The doctor didn’t think it is PG. I asked then how can it be so painful and hot and burning without infection and inflammation? The doctor recommended I see a plastic surgeon and go in to the IR and he so debridement and skin graft. I didn’t feel good about it. So I’m starting on Santyl. I’m hoping it removes all the yellowish biofilm. Any helpful suggestions on using this cream?

@toothgirl Welcome to Mayo Clinic Connect.

Your leg looks extremely painful. You are in a difficult place.

You have sought appropriate medical care but you still do not have answers. Isn't it true that when you have an autoimmune disorder, typically there are multiple autoimmune disease diagnoses? Could it perhaps be a different autoimmune disorder?

I can imagine that you do not feel good about a skin graft and you are looking to exhaust all other options before having such an invasive surgery.

You would like to connect with members that have used the cream Santyl.

You are also looking to connect with members that have information on Pyroderma Gangrenosum.

Members like @becsbuddy @gingerw @lioness @tcokeefe @sunnyflower @rgg @johnbishop @ginyer @lorrainechavez @ginyer @nets2020 may be able to help you find the support and answers you seek.

I added this discussion to the Skin Health group in order to extend the member reach, to increase the likelihood of your questions being answered.

May I ask how long after using the cream are you supposed to see results?

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@erikas

@toothgirl Welcome to Mayo Clinic Connect.

Your leg looks extremely painful. You are in a difficult place.

You have sought appropriate medical care but you still do not have answers. Isn't it true that when you have an autoimmune disorder, typically there are multiple autoimmune disease diagnoses? Could it perhaps be a different autoimmune disorder?

I can imagine that you do not feel good about a skin graft and you are looking to exhaust all other options before having such an invasive surgery.

You would like to connect with members that have used the cream Santyl.

You are also looking to connect with members that have information on Pyroderma Gangrenosum.

Members like @becsbuddy @gingerw @lioness @tcokeefe @sunnyflower @rgg @johnbishop @ginyer @lorrainechavez @ginyer @nets2020 may be able to help you find the support and answers you seek.

I added this discussion to the Skin Health group in order to extend the member reach, to increase the likelihood of your questions being answered.

May I ask how long after using the cream are you supposed to see results?

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Thank you so much for for the information. I really appreciate it!

REPLY
@erikas

@toothgirl Welcome to Mayo Clinic Connect.

Your leg looks extremely painful. You are in a difficult place.

You have sought appropriate medical care but you still do not have answers. Isn't it true that when you have an autoimmune disorder, typically there are multiple autoimmune disease diagnoses? Could it perhaps be a different autoimmune disorder?

I can imagine that you do not feel good about a skin graft and you are looking to exhaust all other options before having such an invasive surgery.

You would like to connect with members that have used the cream Santyl.

You are also looking to connect with members that have information on Pyroderma Gangrenosum.

Members like @becsbuddy @gingerw @lioness @tcokeefe @sunnyflower @rgg @johnbishop @ginyer @lorrainechavez @ginyer @nets2020 may be able to help you find the support and answers you seek.

I added this discussion to the Skin Health group in order to extend the member reach, to increase the likelihood of your questions being answered.

May I ask how long after using the cream are you supposed to see results?

Jump to this post

I talked with the Plastic surgeon at the U and he said could take up to 2 months

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@toothgirl You must be so frustrated and upset with all that has happened to you. And now you’ve got a surgeon who wants to do surgery and you’d prefer to use Santyl cream, but have questions about it. Did I get all that right? Looks like there are two important precautions: keep cream off of healthy skin and very carefully avoid infections. I’ve been carefully avoiding infections for 3 years now because of medications I’m on so I know it’s do-able. (I would recommend staying away from public swimming pools and hot tubes)
I found some information for you. I do hope it’s helpful.
Will you let me now how the cream works and how You do? Becky
https://www.webmd.com/drugs/2/drug-9489/santyl-topical/details

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@becsbuddy

@toothgirl You must be so frustrated and upset with all that has happened to you. And now you’ve got a surgeon who wants to do surgery and you’d prefer to use Santyl cream, but have questions about it. Did I get all that right? Looks like there are two important precautions: keep cream off of healthy skin and very carefully avoid infections. I’ve been carefully avoiding infections for 3 years now because of medications I’m on so I know it’s do-able. (I would recommend staying away from public swimming pools and hot tubes)
I found some information for you. I do hope it’s helpful.
Will you let me now how the cream works and how You do? Becky
https://www.webmd.com/drugs/2/drug-9489/santyl-topical/details

Jump to this post

Thank you for the info!

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@toothgirl

Thank you for the info!

Jump to this post

@toothgirl I just thought of something else that you may want to do. Go to the tattoo parlor and explain/show them what happened to your foot and leg. They may need to update protocols re cleaning and safety. Just a thought. Think you might do this?

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