Scalp and extremity sores/blisters

[baddog3266]

Hello
      My wife is a post liver transplant patient . She is approx 3 1/2 yrs post , she has already done the pegasys treatment and sadly was unsuccessful, but during treatment about 3-4 months in she started getting small bumps on her head first one or two then within a couple of weeks her whole scalp was covered with them and they were pretty big almost the size of a dime in diameter. After the six months of treatment she was taken off the meds because she was deemed a "non responder" which is devestating news and to add insult to injury she was later told that the mortality rate for hep c post transplant with the way her disease is progressing is approx 7 yrs she was told this in oct 09 (she had her transplant in oct 06) so you can imagine the pain she is going through . The bumps on her head sort of went away but not altogether a few hung around and now they are flaring up again and last week she got what looked like a bug bite on her wrist and within a couple of days it swelled to a blister and finally broke but it wept for 3 days before it actually eased now it is still there but it is a yellowy green center with a red ring about a 1/2 inch around the center of dark red irritation and alot of pain from this and her scapl which she is barely able to even brush her hair because of the pain in her scalp .She also is getting these bumps on the pelvic area (crease of the leg on the front on both sides Is this part of her disease or is this a completly different thing your response to this will be really appriciated

[HectorSF]

I can't comment of the skin issues...but you say

"After the six months of treatment she was taken off the meds because she was deemed a "non responder" which is devastating news and to add insult to injury she was later told that the mortality rate for hep c post transplant with the way her disease is progressing is approx 7 yrs..."

The good news is that new meds which will be available soon have a much better chance of achieving SVR than the current peg-inter and ribavirin meds. The first of these new meds (Telaprevir) should be available in 2011 (Spring is what I am told). As long as your wife's doctors are experienced with HCV and transplants they will know about this new development and try to retreat her for her HCV. Even if she has fibrosis or cirrhosis of the new allograft, the new meds are much more effective then current SOC meds especially for current none responders.

The new meds will be a huge step in the treatment for HCV patients including HCV pre and post transplant patients.

Don't give up hope. New treatments are only a year away!

HectorSF

[Trinity4]

Sounds like a fungus to me especially if it presents in the folds of skin in the pelvic area where the skin is not exposed to sunlight.  PCT doesn't have a red ring around it per say and it doesn't start out as bump or at least mine didn't.  Blisters present immediately and start growing in size and after the blister erupts the skin is raw and exposed but weeping for several days after doesn't usually occur.  

PCT is primarily seen on the back of the hands and along the arms.  Never had any bumps on my head.  If your wife has had recent blood work and the hgb is elevated or the ferritin levels are high PCT may be indicated.  

A dermatologist can determine whether it's a skin issue or PCT but since she is a transplant recipient it may be advisable to start with her transplant specialist.

Trinity

[GSDgirl]

Great advise Bill.  That was my thoughts also.

Baddog, has her ferritin been checked recently if it needs checked along with iron.  My blisters just kept filling up with clear liquid, and they hurt and they did get worse.  Hers sounds infected.  Her damaged liver cannot process the porphyrins so they come out through the skin.  Has she been in the sun recently?  The sun brings it out (wish I knew that then)

If that is your problem it can be brought under control.  I had 5 phlebotomies (blood removal) in ten weeks, some people need more.  If that is your problem wear gloves and some kind of hat.......I spent a whole summer in an ugly floppy hat, gloves. a uv resistant  long sleeve shirt.  I also used a very good sunscreen with at least was 70, Neutrogina has one with some kind of new chemical "blaaa  yuck"

Good Luck
Denise

[Bill1954]

She should definitely discuss this with her doctor. Has anyone considered PCT (Porphyria Cutanea Tarda)? It is heavily associated with HCV, and is photosensitive, often showing up in areas that are subject to sunlight. Try keeping her skin covered completely from sunlight, until this can be checked out. Covering won’t cure it, but might lesson the lesions. I believe this can be managed quite effectively through simple phlebotomy; but she would obviously require testing and diagnosis. Here’s an article that discusses this condition:

http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/PCT

From the article:

“Because PCT is frequently associated with Hepatitis C Virus (HCV) infection, it is worth noting the issues involved in treating a patient with both PCT and HCV infection.
Infection with HCV is much more common than PCT, and most people with HCV do not have PCT. However, at least in some locations, as many as 80 percent of individuals with PCT are infected with HCV. Therefore, HCV needs to be added to the list of factors that can activate PCT alongside alcohol, iron and estrogens. Other hepatitis viruses are seldom implicated in PCT, and it is not known how HCV activates PCT.”
Best of luck to you both—
Bill