Actually, you can type in Porpheria Cutanea Tarda and go to the web site, and they tell you that it is associated with hepc.
we have been told that had he not contracted hepc, that his PCT probably would have never surfaced. You know PCT from other skin problems b/c it does look just like little blood blisters that break out, primarily on the hands(due to sun exposure) some people get it on their arms or even their face,so he counts his blessings that he has not had to deal with that. They are very painful blisters though, and at one time both his hands just looked like raw hamburger meat, since he has been on tx it has only been a couple of blisters at a time and his hands have healed quite a bit, although there are life ong scars there now.
I am wondering about your hubbie's skin problem. I too have very bad skin more on the hands and feet very dry and peelie. I have spent big $$$ on Dermatologist for the past 5-6 years with little or no help. I have used every cream, lotion, ointment there is. I will ask my liver md next week it she thinks it is associate with the HCV. I am not on tx yet getting a bx on the 1 Dec. I am 55 y/o f 1b. What are they giving him for his skin now? and who told him it was related to the HCV? Anyone else with very dry skin (hands) that have been told it was due to the HCV
SJ
His PCR was great, he was "undetectable", I often wonder what that really means. His PCT (skin legions) are still "off and on" which tells me that the virus is still kicking somewhere in there. He seems better, b/c he is on procrit now, but I know how deceptive that can be. His hemoglobin got all the way down to a low 9, which is pretty dramatic considering he started tx at a 15. Poor guy looked like he was going to just drop dead for a while. It's pretty scarey to watch someone go through that, when you know your next for tx.
But I agree with you, "how can V.L. not have anything to do with the big picture" if it doesnt matter then why get the VL to start unless it's just a measuring tool.
We all seem to be so unique in VL and symptoms, and actual liver damage, sometimes I think they really dont know as much as they pretend, but dont want to admit it.
Has anybody tried "A STUDY" and do you have to go through traditional tx and relapse or no response to qualify for the study tx that is out there.
lilmoma
Thanks for sharing your story. I too think your doc is being thorough and that is good. I also just did shot #20 last night, the same as your hubby. How is he doing - what was his 12 week PCR? I am sorry to hear of his skin problems and I do hope they will clear up after treatment.
Actually we found out my hubby had HepC b/c of a skin condition he had. He had it for a whole year, and it just kept getting worse!! So when the next open enrollment came around for my ins. I signed him on thinking he needed a dermatologist. Were we surprised to be told he had porpheria cutanea tarda!!!!!!!!!
And that is when they broke the news about his having hepc, and that I needed to be tested as well.
Funny, b/c for the last few years I had been complaining about be tired all the time, which anyone that knows me, knows me as a type A personality, very high strung, and always busy.
We are both type 1b. His viral load is much lower than mine, only 180,000 to my 2 1/2 million, yet he has the extrahepatic features and no other major symptoms.(his hands looked like hamburger meat) from all the little blisters. We both engaged in very high risk behavior as young adults (drugs) and havent fooled with them for the better part of 20 years, but they did their damage.What we have discovered through this whole process is that this disease is as individual as fingerprints, and there seems to be little correlation between viral load and the actual advancement of damage to the liver. I continue to study and learn all that I can. Sorry if this was too long winded.
lilmoma
I agree! he is a good, thorough doctor! Anemia from the tx can cause cardiac problems, so he wants to make sure there are no underlying conditions that need close monitoring. I don't think they deny tx, unless it is a severe condition.
Welcome and Good luck.
You might want a vision baseline test also.
Long Island. All the way to the other end. My sis still has a condo and her son in San Jose. My dear friend in Tarzana and I used to live in Merced, a couple of decades ago. I find the Pacific waters cold all the time, even in the Summer. Here too. But when is 90 degrees I can handle it.
time for another dentist appt...later
Same here! Have a good weekend! I read you were going to the beach in another post, where in the world are you? I am by the beach also, but is not nice to visit it this time of the year.
I also had a stress test and it did not go well. when I go there my blood pressure was up to high for me to get on the treadmill. The gave me meds instead and I made it through the rest of the test. None of this had anything to do with me not starting tx. I also will be starting sometime the first few weeks of December. My question is it common for both mates to have hep c. Did you get tested when your hubby found out he had it.