Hep C and Porphyria Cutanea Tarda....

[sideways77]

I was diagnosed with PCT last fall.  I started blood letting to reduce the iron and ferretin levels in my liver in March.  I was informed by my Gastro Doctor today that I am to stop the blood letting.  That my levels were down to normal, and just test once a month for maintenance.  The bummer of this for me is... my hands are still screwed up.  The water blisters have lessened, but I ocasionaly get them, and my skin is still very brittle and tears easily.  I know there are a couple folks who are familiar with PCT here on this board.  So I guess my question is... "Will this get better?...or do I need to do something else that Im not being told about by my doctor?"  The blood donor clinic I go to is just fantastic, and the folks have recommended that I see a "Hemotologist??"  I have no clue what this type of doctor can offer??

In regards to my Hep C, I was diagnosed in March also.  Since diagnosis my genotype has been identified as 1A, which from what my Gastro doc has told me is the most common here in the US.  Also, not the most responsive to the interferon treatments.  I have a liver biopsy scheduled for mid July, so we can get an idea as to what stage I'm in.  After that I guess the decision will be made whether we go ahead with the interferon.  He tells me that we will know within 3 months whether the treatments are promising or not.  Sound about right???

Thanks for any or all suggestions or input.

Greg

[sideways77]

Did you see a Hemotologist Denise?  That's what my Blood donor center people recommended.  Also, Im a little confused, with my Hep C...do I need to continue with my Gastro doc, or see a Heptologist (sp) in regards to treatment planning/advice??

Thanks

Greg

[GSDgirl]

Good deal on wearing the gloves.  Between the phlebotomies and keeping the sun off your hands, even for a minute, they should start to heal.  But you need to get the hep treated or the PCT will come back :-(.  

There are people on here that have info on the cutting edge ways of treating, I am not one of them.  A few extended to 72 weeks and are SVR today.  Good Luck

[sideways77]

Thanks for the link Pretty... :) You bring up a good point I really didn't think about much.  As long as I'm not stage 4 I guess I don't have to be in a absolute frantic hurry to get started.  My doc tells me that the biopsy is basically only a "Snapshot" of the liver.  That it is not 100% conclusive, but it will give us an idea.  As far as I reckon, Ive had this since '85.  So I guess I'll have to see what the biopsy says.

Hi Denise :)  I have done a LOT better regarding the sun contact.  I pretty much have my gloves on at work anytime Im outside.  Other times at home I'm usually conscious about keeping them out of the sun.  As far as the treatments for geno 1A, my doc says with all factors considered it's probably less than 50% chance of success.  Don't get me wrong...he says "Go for it" and is very positive.  He's just going by the numbers I guess.

Trinities not here anymore????? :(

Thanks guys!!

Greg

[GSDgirl]

Hi Greg, Did you start wearing gloves when working outside?  The sun is the culprit bringing out the blisters.  I honestly can't remember when my skin quit tearing with every little bump.  Sometimes I still look when I bump my hands.  My hands aren't really scarred too bad at all but I do scar easily now if I get a scrape anywhere.  I also have scars on my arms where they did the bloodletting and all the many, many blood tests.  

Why would your treatment not be promising?  There are a lot of geno 1's on here and they can tell you more about that BUT the hep c actually caused the porphyria and the porphyria will not go away without getting rid of the hep.  At least that is what I was told.

Trinity was the other VERY knowledgable person that had PCT.  She got bounced unfortunately and many of us miss her on here

Denise

[PrettyPoisonNoMore]

I am not at all familiar with your PCT.  I also had 1A and treated successfully on Pegasys and Interferon for 48 weeks (SOC) and have been SVR since 2006.  New drugs are coming down the pipeline and you may want to wait for those if your biopsy is good.  HCV is a slow moving disease until it isn't, so you have plenty of time to do your research.  A good source for the newly diagnosed is the janis site.  www.janis7hepc,com with things to do, questions to ask, lab test information, etc.  Good luck!