Discussions By Condition: Autoimmune Disease

Information on Pyroderma Gangrenosum

Posted In: Autoimmune Disease 9 Replies
  • Posted By: Anonymous
  • July 23, 2007
  • 03:43 PM

I have just found out in the last few months that I have an autoimmune disease called Pyroderma Gangrenosum. It causes my body to attack itself if I have any trama to my skin. In February I had a cat claw me on my chest and because of what i have my skin all came off down to my tissue. At the time I did not know that I had pyroderma and I spent a month in pain before a specialist found out what I have.
Since then it has been a constant stuggle trying to get my skin to grow back. I am on Predisone and Cylcyclosproin that is keeping my immune system at bay. The side affects from these pills are crazy. Sometimes I swell up so much that I cant really move.
I am hoping that someone out there is able to give me some information about how to deal with the side affects. If anyone else has been on or is on these pills, I'd love to hear from you.
This disease only affects 1 in 100 000 people and it would be nice to talk to someone that knows what I'm going through.
Thank you for your time, and sorry for the long message :)
Mona

Reply Flag this Discussion

9 Replies:

  • I was on prednisone for an autoimmune disease that hasnt been diagnoised yet but it did make me swell and it also made me really depressed. Just thought you might want to know.
    Anonymous 42789 Replies
    • August 24, 2007
    • 04:53 AM
    • 0
    Flag this Response
  • I have just found out in the last few months that I have an autoimmune disease called Pyroderma Gangrenosum. It causes my body to attack itself if I have any trama to my skin. In February I had a cat claw me on my chest and because of what i have my skin all came off down to my tissue. At the time I did not know that I had pyroderma and I spent a month in pain before a specialist found out what I have. Since then it has been a constant stuggle trying to get my skin to grow back. I am on Predisone and Cylcyclosproin that is keeping my immune system at bay. The side affects from these pills are crazy. Sometimes I swell up so much that I cant really move.I am hoping that someone out there is able to give me some information about how to deal with the side affects. If anyone else has been on or is on these pills, I'd love to hear from you. This disease only affects 1 in 100 000 people and it would be nice to talk to someone that knows what I'm going through. Thank you for your time, and sorry for the long message :) Mona Two of many things about steroids (like Prednisone) that doctors often fail to mention are that sometimes the treatment is worse than the disease, and that your body gets adapted to them so that you can't easily get back off them without a flareup of symptoms. The answer, when your condition allows it, is to taper off very slowly. By this time you've probably found a lot more information on the net. Good luck!
    AgnosticJaz 23 Replies
    • October 7, 2007
    • 03:32 PM
    • 0
    Flag this Response
  • I found this website whilst looking for info on PG. My husband has suffered from PG for many years. The first time his arm was affected, it took about 18months to diagnose, his treatment was the same as yours and took about 6 months to clear up, although he never suffered with any swelling. He was fit and well for about 3/4 years until 5 months ago he suffered a minor trauma to his eye and has now been diagonosed with PG there. No treatment seems to be working, he has had so many i can't remember them all! We have also been told that the current PG maybe a new strain, we didn't even know that there was different types!!!! Its a really terrible condition. I wish you luck. ps. if anyone knows of anybody whohas suffered in PG in the eye please let us know.
    MRS.JAMJAM 3 Replies
    • January 23, 2008
    • 09:22 PM
    • 0
    Flag this Response
  • I have recently been told that I also have PG...this has been a very long painful journey for me. I cut my leg back in Aug 07, it was a minor small cut I thought nothing of it. The cut begin to grow larger and another wound came up close to the first cut just on its own, causing yet another ulcer to appear on my left leg, a few months later another spot came up on my right leg, I now have been going through so much treatment to try and get this disease under control, I get my legs wrapped weekly at a wound clinic to keep whats called "pressure" on them, this is suppose to help with healing, I recently started the steroid treatments too. I have been off work for 11 weeks and have to return in 1 week. My job is very intense, although it is behind a desk, its a very high paced job with a lot of responsibility, I'm worried that I will not be able to work with this condition. Can anyone give me any advise on how they deal with this painful condition and still work for a living. I really cant afford to just quit my job, I'm a single mother of 2.
    Kireigurl 1 Replies Flag this Response
  • I have just found out in the last few months that I have an autoimmune disease called Pyroderma Gangrenosum. It causes my body to attack itself if I have any trama to my skin. In February I had a cat claw me on my chest and because of what i have my skin all came off down to my tissue. At the time I did not know that I had pyroderma and I spent a month in pain before a specialist found out what I have. Since then it has been a constant stuggle trying to get my skin to grow back. I am on Predisone and Cylcyclosproin that is keeping my immune system at bay. The side affects from these pills are crazy. Sometimes I swell up so much that I cant really move.I am hoping that someone out there is able to give me some information about how to deal with the side affects. If anyone else has been on or is on these pills, I'd love to hear from you. This disease only affects 1 in 100 000 people and it would be nice to talk to someone that knows what I'm going through. Thank you for your time, and sorry for the long message :) Monai have that, and i didnt get any of those side effects but i am a 19 year old girl who is apparently very young for this disease, it took about 5 months for my gash to heal and the only thing the predneson did was make my hair darker and gave me a bit of a moustache haha
    Anonymous 42789 Replies
    • September 17, 2009
    • 06:52 AM
    • 0
    Flag this Response
  • I have just found out in the last few months that I have an autoimmune disease called Pyroderma Gangrenosum. It causes my body to attack itself if I have any trama to my skin. In February I had a cat claw me on my chest and because of what i have my skin all came off down to my tissue. At the time I did not know that I had pyroderma and I spent a month in pain before a specialist found out what I have. Since then it has been a constant stuggle trying to get my skin to grow back. I am on Predisone and Cylcyclosproin that is keeping my immune system at bay. The side affects from these pills are crazy. Sometimes I swell up so much that I cant really move.I am hoping that someone out there is able to give me some information about how to deal with the side affects. If anyone else has been on or is on these pills, I'd love to hear from you. This disease only affects 1 in 100 000 people and it would be nice to talk to someone that knows what I'm going through. Thank you for your time, and sorry for the long message :) MonaI am suffering from from PG. It started with large red lumps on my legs and arms in August 2009, then I started breaking out in open ulcers which spread and grew rapididly, growing in diameter of a quarter inch per day. The largest open ulcer was on my bicep which became the size of a softball baseball. It took 6 weeks to diagnose, going to 2 infectious disease doctors and a specialist in Internal medicine. I am now on prednisone (25mg per day) and 100 mg per day of Doxycycline to help ween me off the prednisone. As well, I'm also applying ratio-clobetasol (0.05 %). The healing process is slow, and the side affects are many. Insomnia, stomach upset and pain, irritability. Dermatologist specialist says my liver and lymph nodes are now swollen and 2 CT scans bears that to be true. No guarrantees that I'll ever fully recover, but drugs can help keep me in line. (With side affects of course).
    Anonymous 42789 Replies
    • October 18, 2009
    • 02:47 AM
    • 0
    Flag this Response
  • Please don't let people put you off steroids, yes they do have lots of side effects, weight gain one of them, but without them I could not get out of a chair, I have lupus. My thoughts are have a quality of life now coz we don't know what is in store later.
    valigene 9 Replies Flag this Response
  • I have just found out in the last few months that I have an autoimmune disease called Pyroderma Gangrenosum. It causes my body to attack itself if I have any trama to my skin. In February I had a cat claw me on my chest and because of what i have my skin all came off down to my tissue. At the time I did not know that I had pyroderma and I spent a month in pain before a specialist found out what I have. Since then it has been a constant stuggle trying to get my skin to grow back. I am on Predisone and Cylcyclosproin that is keeping my immune system at bay. The side affects from these pills are crazy. Sometimes I swell up so much that I cant really move.I am hoping that someone out there is able to give me some information about how to deal with the side affects. If anyone else has been on or is on these pills, I'd love to hear from you. This disease only affects 1 in 100 000 people and it would be nice to talk to someone that knows what I'm going through. hi monamy husband suffers from pg he like you take prednisolone but he takes 60mg per day....he says drink plenty of water per pay. he has been took off the cyclosporin as he is now on a iv drip every 8 weeks of infliximab.i asked his doctor today about using menuka honey on the wound ...she did not fob me off she said she would mention it at a consultants meeting we are going to on wednesday, we have also seen a pain consultant and he has changed the morphine to another drug....will let you know the outcome ok.my husband has been on various meds if you need any names let me know.janet
    steggy 2 Replies Flag this Response
  • Hi Mona and Janet....I used Manuka honey on my wound under the care of a wound care specialist/dermatologist and it worked wonders ( I also was given a couple steriod injections into the wound). It finally started to heal after 6 months of just growing and growing.Please check it and tell your dr. to check it out today not at the next meeting..this disease grows to quickly for that.Wish you well!
    Anonymous 42789 Replies
    • September 5, 2010
    • 06:00 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.