You have come to a good place. And you are not alone. I know I was pretty darned scared when all this started. This forum helps a lot, there are a lot of really knowledgeable folk here. It sounds like you are doing the right things, good luck on the next test results.
Hi, welcome to the forum. There is a ton of knowledge here. The blisters are probably Porphyria PCT. The other iron related thing is hemochromatosis. But the blisters are probably PCT, I had it too, it was how I got diagnosed.
Did they mention phlebotomies? Blood removal is the best way to get the iron overload under control. Others here can offer more knowledgable advice
D-Lynne, welcome to the forum. There are a lot of nice folks here who have been through stuff similar to what you and your husband are going through. My husband also has Hep C and reading on this forum and elsewhere has helped me a lot. There's a good website with a lot of basic information to get you started:
It's good that he's seeing a hepatologist, I hope the appointment goes well.
It is scary -- I have been very scared at various times during this whole thing with my own husband. But hang in there, and best of luck to you both!
P.S. I think what I said came out a bit wrong -- I meant I understand about being scared, not that you should be scared! :) Hep C is often treatable and you will have more information after you see the hepatologist, so try not to worry too much! Many people here have gotten through it all successfully, and they will help you out.
Your doing the right thing by trying to learn all you can. There's a lot to know about Hep C and there's good information here. There's another site called Janis&Friends with lots of good info also.
Like GSD girl said the blisters, sores sound like PCT, short for Porphyria Cutanea Tarde. If you click on my name and go to my pictures you will see pics of what PCT looks like.
If it is PCT its imperative your husband gets his ferritin and iron levels down because excessive iron damages the liver. He may have to get phlebotomies until those levels are within normal range. Its a procedure where they remove blood, a pint per visit.
The good news is that there are lots of new treatments about to come on the market. The new treatments are protease inhibitors and polymerase inhibitors. The new drugs improve the chances of a sustained viral response, SVR, and reduce the length of treatment.
The standard treatment uses a combination of ribaviron and interferon and the new drugs are taken in combination with the standard drugs.
If your husband does attain an SVR, it will stop all further liver damage from the virus and may even reverse existing damage.
Best of luck to you.
good for you for trying to research for husband, learn all you can and try not to worry , there is hope
Yes I would bet his blisters are pct too. I also had this and my iron was up. Thats how I got diagnoised for hep c. I had 2 Phlembotomies and it cleared up and iron went down and Im now on treatment. Good luck
There is also pictures on my profile of my hands with the blisters. Glad Tippy chimed in with the full name, I can never remember it.
Welcome to the forum....you really have come to the right place to learn about the disease and it's treatments and right now that is the BEST thing you can do. Unfortunately some (many) doctors are not as up to date on the latest advances that have been made - but the people in here certainly are. There are some who are smarter than the doctors by FAR and had I listened to my doctor would have failed treatment but by learning about it from the smarty pants in here they helped me to be cured for over three years now.
Everyone is scared when they find out. Everyone wonders "where did I get this? when exactly did I get this?" the thing you find out is that really doesn't matter one bit - it's a LUCKY day you found out he had it so that now you can do something about it and he can be cured.
If someone has to have a disease this one isn't that bad - usually it's very slow to progress and there IS a cure.
You are going to a heptologist which is good some people dont have that option and have to go to a GI many of who don't know an awful lot. Your GI is going to most likely (hopefully) tell the hubby to get a biopsy. Iti sounds DREADFUL but it's really really not as we all have found out - it's relatively painless. This piece of information that you will get will tell you if he has a lot of liver damage and must treat now (atlhough in his case and symptoms it sounds like he'd probably be well off to anyway) or if he has time to wait to see if the newer drugs pan out in a few years. The ultrasound will only tell you if he has any tumors or growths - the biopsy will tell you the degree of fibrosis he has built up in his liver and whether or not he is cirrhotic.
It all sounds scary but the more you learn the more it's not. While treatment isnt fun most of us make it through just fine with some side effects of the meds of course but.....we make it through. I treated for 72 weeks and am a single mom (widow) so I had to come to work every day and I had pretty drastic sides........if I could do it a tough strong cop will be able to - believe me!!!!!!!!!!!!!
Good luck from all of us D!
PS My middle name is Lynn - Deborah Lynn so I"m a D_Lynn too just without an "e". :)
Wow! Ya'll are a huge book of excellent information. ;) I don't feel so alone with this now. Thanks to all of you for your support and information about this disease. My husband definitely does have PCT. He has battled with skin problems as long as we've been married, 20 years. It has just gotten worse over time. He is out in the sun a lot. He does wear a hat while outside but the sun has really taken its toll on his hands.
And one of the worst things are the lesions on his scalp. He says they itch and would ooze and then scab over. He has been seeing a dermatologist for two years and I'm wondering why they didn't catch on to this way before now. The Derm doc is the one who sent him (finally) to the hematologist. With all the creams, shampoos, and prescribed meds his scalp is finally better and his hair is growing back. My husband, Mike, has blue eyes and ash blonde hair with some gray sprinkled in. lol His skin is very tanned even though he has fair eyes and hair. The Hematologist wants us to see a doctor in Houston, Texas. We totally hate the idea of having to go to Houston. The traffic there is horrendous! We are not used to that. lol We are country folks. ;) It is much easier to drive to Temple, Texas and go to Scott & White Hospital and Clinic. We have been there many times before so we are looking at this option.
We didn't know till recently that Hep C can lie dormant for a long time before manifesting itself.
About four years ago while on the job he had severe disabling pain in his leg. He just crumpled to the ground. They took him straight to the hospital and the doctor there thought he had a blood clot. No blood clot showed up. We never did really know what caused this. It has happened to him twice. It's sort of like the blood flow is either cut off from the leg or slowed down so that it causes severe pain.
So many questions.
He will forever be trying to figure out how he got this. You all are right in that it really doesn't matter now where he contracted hep c. We just need to get on with the treatment options and hope for the best.
Only you can make the decision about where to treat. The only thing I can say is that it makes a HUGE difference when you see a trained hepatologist at a major medical center. They get access to all the new drugs and are best equipped to properly recommend a treatment for your husband. It is a pain to commute, but I think it is worth it, unless you are very lucky and get a well trained hepatologist locally. Most local doctors are not up on the latest treatment. New developments in HCV treatment are fast paced, so most local doctors will not know as much as you do if you read this forum regularly.
Best of luck to you.
To answer your question concerning phlebotomies. No the specialist did not mention how the iron levels would be brought down but when I got home I researched this and along with this forums excellent info found out that the phlebotomies are done to bring the iron levels down. The hematologist that we saw did say his iron levels were up and would have to be brought down. She just didn't say how.
She came in the exam room, sat down, and began telling my husband what she found in the lab results. We of course were shocked and had questions. But I couldn't help but feel like she was anxious for the visit to be over that her part (job) was done. She wasn't rude, I don't mean that. It was as though she was as shocked as we were.
Scott & White ranked among nation's top heart hospitals-
Thomson Reuters’ recognition received for sixth consecutive year --RELEASED April 3, 2009 for publication-
TEMPLE, Texas – For the sixth year in a row, Scott & White Memorial Hospital has been ranked among the top 100 hospitals by one of the nation’s key health care rating groups. In addition, Scott & White is the only major teaching hospital in Texas as well as the only health care institution in Central Texas to make the prestigious Thomson Reuters Healthcare 100 Top Hospitals Benchmarks list for 2008.
This is the Hospital we want to go to. I've called already and they have four Hepatologists specializing in liver diseases and liver transplants. I feel confident this will be an excellent hospital.