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
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
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
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