pyroderma gangerosum

Hi Lisa.  Same here, no one knows how to deal with it.  I was misdiagnosed back in February and had seen about 6 different Drs.  I am now through the worst of it and it's October!!!  I found a Dr. at Henry Ford Hospital, a dermatologist, and he hadn't seen it either.  I'm thinking they  guessed on my treatment which is high doses of Predisone and Cell Cept.  I wouldn't recommend that to anyone, it's been a nightmare!!  Now my other organs are giving me trouble.  Where is yours at?  Mine is on my legs.

Hi Kim I had it in multiple places but the biggest ones were on each leg and on my lower back. My misdiagnosis was made in May 2015 and I was incorrectly treated until the 11 July 2015 so by this point when I was started on high dose Preisone and cyclosporine combined with 7 or 8 treatments with larvae as the infected areas were so messy and deep - I could see the bone in my leg. I then had Vac therapy for about 3 months and nurses coming to my house everyday to change the pump. I'm still on the cyclosporine. And seeing dermatologists even though none of them have seen or treated it before. I think a lot of guess work has gone into my treatment, there just doesn't seem to be anybody who knows how to deal with it. My scars are horrific! How do your scars look? Are you still being treated? I am and I guess I will be for a while. Are you scared it will come back? Every little mark I see on my body makes me paranoid. 

I am terrified it will come back although it's not totally gone.  I have horrible scars too but mine are just on my calfs.  The worst pain I have ever felt, worse than childbirth.  The Drs. even refused me strong pain medicine because they knew nothing about this disease and made me suffer.  I am now weaning myself off the predisone and cellcept, totally sick of what all these meds are doing to my body.  I have noticed my ankles starting to swell and that scares me as this is how the little sores started in the first place.  Oh my, yours sounds so much worse than mine as I didn't see my bone, it didn't get that deep.  I did all the wound care because of the pain, I didn't want anyone near me.  And it took me forever, tears and all.  I wouldn't wish this on my worst enemy.  They tell me this is crohns related so now running me through a battery of tests to check for that even though i have never had any signs of it.  Ulcers now in my colon due to the meds, just waiting on biopsies to see what they will do about that.  I am so tired of everything, the stress and depression, the pain and isolation, is taking it's toll.  I have been confined to my house since June, can't go in public and don't trust myself to drive.  I have zero immunity.  Not sure where you are located, but my nurse is trying to talk me into going to the MayoClinic in Minnesota for treatment where someone might know a thing or two about it.  That's my biggest problem, no one is educated in this and it makes it harder to treat.  Hang in there.

Kim I am honestly reading your message with tears of relief because finally I am speaking to somebody who REALLY knows how I feel. When you are talking about pain medication I can't believe they refused you anything! I was knock over by a car 10 years ago so I was already on some strong pain medication due to the injurys from that. But when I was in hospital they started me on ZoMorph 20mg each morning and evening so I had a pain killer constantly in my system and I take Sevradol which is a tablet morphine up to 4 times a day (20mg tablets). PG also affects the nerves where the blister/ ulcers have been it destroys everything in its path so I also take Pregabalin 100mg 3 times a day. I was started on perisone but when I reacerached the condition myself steroid treatment isn't the best action immune suppression drugs are so I was weaned off it within 3 months (I had put on 3 stone with it though) and started on cyclosporine 250 twice a day. 18 months later I'm on 75 twice a day and like you said I'm scared to go anywhere or leave the house my immune system is so low, but also my confidence which people don't understand, but my body has really changed with the weight gain and the scars and I can't sit for long as the ulcer on my lower back was operated on (before I was properly diagnosed the Dr's now know that operations can worsen the condition) but I had a Debridement to clean the area inside because it was close to my spine and they thought it was infected. Anyway there is now a lot of hard scarring inside and it feels like I'm leaning on a brick.

Iam in the UK but am so glad to be having this conversation! I have repeatedly asked to be referred to a specialist who deals with this condition but I'm not sure there even is one! The couple of Dr's who have seen it said it was on elderly people who lost limbs or died from complications. I'd love to be able to show you some of my pictures and take some of how they look now, whenever I look it up on the internet I can only find pictures of the condition when it's active not how the scarring looks afterwards, I'm sure mine shouldn't look like they do I have a whole chunk out of the back of my right leg that looks like I've been bitten by a large dog.

ive also been asking to be checked for any of the conditions which PG can be associated with Chrons, Colitis, RA ect but haven't yet been referred to anyone. Are you happy to tell me some more about the treatment you recieved when they did diagnosis PG. I think my treatment was extreme and barbaric, it's amazing how quickly I got to the point where I was desperate enough to agree to having maggots strapped inside the wounds as there was so little the medical profession could do to slow down the rate I was deteriorating. I would love to hear some more from you or anybody else has had or treated this. 

Oh Lisa, that treatment does sound awful.  Besides the steroids and cellcept, I was just told to rinse my legs with water, (I could only handle a trickle as the pain was so bad) and air dry the edges.  I put cream around the dry edges and covered the rest of the sore with a non-stick pad soaked with vaseline.  Then wrapped my legs with gauze dressing and closed with tape.  I then covered that with a cotton protector.  Your treatment was awful and I wonder if they had done something else you wouldn't be so scarred?  I am 57 and fairly healthy.  I went in for a routine screening colonoscopy at the end of November of last year. At the end of January I noticed the little bumps which looked like a bite.  Being it's winter the Dr. blamed it on my cats (whom don't go out anyway) and told me to put ointment and a band-aid on it.  They continued to get worse and I had 2 biopsies that came back wrong also.  It wasn't until I had a heart attack that the Drs. started to take me seriously.  The blisters exploded all over my legs and by July I was hospitalized and 7 Drs. didn't know what to do for me.  The crohns Dr. I am seeing now told me the PG afftects the heart so be careful.  In all of my research I had never run across that.  I can't believe they are not referring you to other specialists!  At least they need to be doing lots of blood tests to check things out.  My blood work comes back screwy everytime.  It also shows I have RA which I don't have any pain from that.  I do believe a hole was poked when I had the colonscopy and this is what happened.  Of course all the Drs. deny that to cover themselves.  I came down with strept throat in February and my leg starting swelling.  This is when they started sending me to different Drs.  Dermatologists, rhuematologists, this is still going on!!!  I'm hoping to get some anwers from my biopsies soon.  I used to have tons of energy, worked and loved the outdoors.  Now it takes everything I have to get up in the morning.  I wish I could be the way I was a year ago before this started.  I did read that trauma to ones body will cause this.  Makes me wonder if your accident didn't cause yours and you''ve been harboring this in your body?  I would demand to see other Drs. and get some more opinions if I were you, you been through so much.  I can't even imagine the treatment you are having but at least they give you something for the pain!!

Hi Kim, it apprearers we were given quite different treatment. I was not allowed to get my wounds wet at all and once they had fitted the vac pump I couldn't get that wet anyway. My Mother expressed the same opinion that the trauma from my accident could be a trigger but I was in my late 20's then now I'll be 40 in March. I am going to insist that somebody do the tests for the underlying conditions which may be linked to this. 

Iam so disappointed with the way I have been treated by the hospital, I never had an apology nor has anyone admitted that my scarring would be much less had treatment started immediately.

Did anybody take responsibility for your misdiagnosis? Iam furious with my hospital because they in affect made the condition worse by 'popping the blisters' with a pin in the beginning and putting mesh bandaging over the top. I am hoping some more people will join this discussion because I feel that PG should be researched and dermatologists should be aware of it. 

Because of our ages there is a high chance that we will get this condition flare up again at some point in our lives and I am determined to find out as much as I can about it. Iam trying to put some pictures for you to see but I don't think I have done it correctly. 

I have tried to write 3 times now and something isn't working.  I would love to see pictures Lisa and I'd be happy to show my before and after pics.  Are you on Facebook?  I'm trying to figure out a way to do this in private.

if you email me I can send you pictures Lisa