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LastDemocratInSC

(3,715 posts)
1. Lots of good information about this on the web.
Sun Jun 2, 2024, 04:41 PM
Jun 2

It's not contagious and is thought to probably be an autoimmune disorder.

From National Institutes of Health:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542232/

Ptah

(33,171 posts)
2. Thanks for replying, LastDemocratInSC.
Sun Jun 2, 2024, 05:19 PM
Jun 2

For the past two months she has been in and out of the hospital.
Her wounds are horrific.
She had surgery six days ago and is in constant pain.
Tomorrow she will be transferred to a long term care facility.

KarenS

(4,301 posts)
3. No experience with it,,,
Sun Jun 2, 2024, 05:39 PM
Jun 2

Thank goodness. It sounds terrible.

I am sorry to hear that your daughter and you are going through it.





Warpy

(112,196 posts)
5. It's super rare
Sun Jun 2, 2024, 06:20 PM
Jun 2

I worked on a dermatology unit in Boston where they'd bring people in from all over the planet who had various skin conditions and I didn't see that one.

Tell your daughter she's very special. She'll feel about as honored as I do, I also have a rare disease.

I know they've had good success treating it with the newer monoclonal antibody drugs, the ones that end in -mab. With luck and a great deal of whining from the insurance company, perhaps you can prevent outbreaks.

It sounds miserable.

Ptah

(33,171 posts)
8. I'd like to know more about the " newer monoclonal antibody drugs"
Tue Jun 4, 2024, 01:49 PM
Jun 4

Is this something that is developed for each individual patient?

Warpy

(112,196 posts)
9. No. The drugs are antibodies against the body's pro inflammatory response
Tue Jun 4, 2024, 02:38 PM
Jun 4

Here is a decent article that doesn't dive too deeply into alphabet soup: https://www.verywellhealth.com/monoclonal-antibody-6890067

greatauntoftriplets

(176,170 posts)
11. Didn't see this until now.
Wed Jun 5, 2024, 02:43 AM
Jun 5

I've had it for nine years, and I sympathize with your daughter. It's nasty disease and extremely hard to cure.

Where are your daughter's wounds located? Mine are on my right ankle, and fairly extensive. It's also quite painful at times.

They say the prednisone has helped in some cases. I am allergic to it. I've had treatments from maggots to take away the dead tissue to two rounds of skin grafts. None of those have worked.

My wound care doctor of seven years retired recently, and I've just started seeing someone new. He plans to do a new kind of skin graft once he gets the insurance approval.

Make sure that your daughter knows that debriding the wounds is he worst thing for them by making them even worse.

Also, throughout the course of my battle with it, I've had numerous infections in the wound. I've had staph, MRSA, cellulitis, and pseudomonas. I had to be hospitalized and in a rehab place for two and three months at a time on IV antibiotics. Those helped for a time, but the more I had them, the less effective they became.

Earlier this year, I started Remicade infusions, and they seem to be helping. I'd had them before with limited improvement. That got interrupted in November of 2020 when I fractured my other ankle and had to have surgery on it. I am fortunate that the manufacturer is paying for the Remicsde because it costs about $12,000

per dose.

I've spent tons of money on bandage supplies, and learned to not let the sight of the wounds run my stomach. I can even change my bandage competently.

I hope that the LTC hospital stay and her treatments there at least help to relieve her pain and start the healing process. I can recall lying awake at night because of the stabbing pain from the pyoderma.

If you want to ask questions, feel free to shoot me a PM and I'll tell you what I can. I'm not a healthcare professional though I've picked up more knowledge about this thing than I ever wanted to know.

Best of luck to you and your daughter.








Ptah

(33,171 posts)
12. Thanks for sharing your experience with this condition, greatauntoftriplets.
Wed Jun 5, 2024, 07:55 PM
Jun 5

My daughter's wounds are in each armpit and her inner thighs.

Re: debriding the wounds.

Is that something that she has a choice if a doctor recommends debriding the wounds?

She is expected to be in this long term facility four four or five weeks.

Again, I am grateful for your recounting this particular journey.

greatauntoftriplets

(176,170 posts)
13. I can't imagine having wounds in those enclosed spaces.
Wed Jun 5, 2024, 10:11 PM
Jun 5

The skin in both those places is delicate and rubs up against other skin. I hope they're giving her good pain meds.

She should have a choice about debriding. It causes something called pathergy. Essentially that means that it makes the wound worse. https://en.wikipedia.org/wiki/Pathergy

I see both a wound care specialist and a dermatologist. Both have treated pyoderma before, which is good though what works on one person may not work on another. This is an orphan disease, so there's not a lot of money going into research on it.

I hope that she gets out of the LTC facility sooner than that. It's so boring being hospitalized for a long time. I'm ready to climb walls after a week, and she's a lot younger than I am.

You're welcome. I'm happy to share. When I was diagnosed with this in 2015, I had no one to tell me about what it was like. I read what information was available online, and looked at some of the horrendous photos online.

Take care.

Ptah

(33,171 posts)
14. I want to thank you, greatauntoftriplets.
Sat Jun 29, 2024, 09:30 PM
Jun 29

She is being given powerful pain meds.
Last week, she was discharged from a 'long term care facility and is now at home.
I have seen no improvement in her condition.
A wound care specialist sees her three times a week.
Her sisters did some research and found six cases of Pyoderma Gangrenosum in Tucson.
Some of her wounds are so bad she won't show me.
Your perspective gives me a realistic view of her near term future.

greatauntoftriplets

(176,170 posts)
15. You're very welcome.
Sat Jun 29, 2024, 11:36 PM
Jun 29

That's wonderful that she's being given pain medication. The pain from PG can be so intense you want to scream. I feel very lucky right now to not have much pain. They tell me that could be that the nerves are so damaged that they just don't function anymore.

If she's seeing a wound care specialist three times a week, she's being given a very high level of care. That's what she needs just to keep the wounds clean and free of infection.

In recent weeks, I've had two skin grafts done. I'd had two rounds of skin graft with other doctors, and those failed. This doctor is using a different product, and so far he's hopeful about them.

I'm pleased that my description of it is helping you know what to expect from the disease. I'm quite a bit older than your daughter as well. Her youth could speed of the healing process. I know that it doesn't seem like that now. You and your daughter are in for a long haul.

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