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Blisters on hands Porphyria Cutanea Tarda

     My husband has HCV and has Porphyria Cutanea Tarda. Sore blisters on his hands, that are very painful, and very fragile skin.  I saw on the site on another occasion that others were treated with Cholorquine tabs and Silver Sulfate Ointment.  Could anyone tell me at what dosage they were prescribed.  And about how long it was before they found it was helping thier hands heal?  Any other siguestions would be great too.
AmeliaFufu
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Avatar universal
I haven't heard of that type of lotion, but when I go to get the sunscreen that GSDgirl recomended, I'm going to look into purchasing it also.
Thanks So Much,
AmeliaFufu
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Avatar universal
I'm going to get the sunscreen right after work!  Living in Florida we have lots of sun, and the tip I'm sure will be of help.
Thank you,
AmeliaFufu
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Avatar universal
A friend of mine has  PCT undergoes regular phlebotomy, but when blisters are present dermatologist recommended an over the counter lotion called PAX, you may have to ask the pharmacist to order it , about $16.00 a bottle, helps relieve some of the symptoms.  Good Luck    
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475300 tn?1312423126
I also had PCT. I went the phlebotomy route also.  No unneeded drugs in the system which means no unwanted OTHER side effects is the way I thought.  Once they take the blood, do the blood work and the blisters cleared up real fast for me.  Last summer I wore gardening gloves, a wide brimmed hat, and a long sleeve UV resistant shirt until things were under control.  Also my dermatologist told me about neutrogina sun screen with helioplex, it blocks both types of sun rays, other sun screens are not good enough.  

Even tho I had it too Trinity knows more technical stuff than me but I can at least help with some suggestions, like----even one minute in the sun will make it worse and even on cloudy days the UV rays are there.

Denise  
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Avatar universal
Thank you so much for your helpful insight in to my search.  This site is the best because of it's member like you.
Thank you ...
AmeliaFufu
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Avatar universal
I also had PCT.  That is how I found out I had hepc.  PCT is caused by high levels of ferritin (iron) in the blood and the livers ability to process iron is greatly dimished.  Porphyrins are released into the blood and cause the blisters and fragile skin. Sun exposure and alchohol cause the condition to become worse as well.  The best form of treatment for PCT is phlebotomy (blood letting - 500 cc per session)  I had a total of 13 prior to starting tx in March.  My ferritin level started out at 783 and was reduced to 17 which is a good thing for those of us with hepc.  Cholorquine is not the best solution because it can cause the iron levels to drop too quickly and you can become severely anemic.  Blood levels must be checked frequently as well.  Has your husband considered treatment for the hepc?  If he's known he's had the disease for at least 20 yrs he should have a liver biopsy to determine the extent of damage to his liver.  Hepc usually takes a long time to damage the liver, but that is not always true.  Given the fact he has PCT there is a very strong possibilty he does have damage.  I was diagnosed with stage 3 liver disease.  The next step is cirrhosis so I had to start treatment as soon as my PCT was in check.  PCT is chronic, not really any cure, but the doctor said treat the hepc and the PCT will go away and it has so far.  If I can answer any other questions, please ask.  I feel I am somewhat knowledgeable in this area and will share any information I can.  Another one of our memeber GSgirl also had PCT and she may lend some expertise as well.  Good Luck
Trinity
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