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Porphyria Cutanea Tarda (PCT): Any experiences?
My sister is in End Stage Renal Failure and has developed PCT. She is is so much pain with the blisters and it has become completely debilitating. For the past 5 weeks she had undergone aphresis to cleanse the iron from her plasma. Prior to the aphesis, her ferritin level was at Ferritin 1596, 56% sat, with Total porphyrins: 251 mcg/dL, and specifically Plasma--Uroporphyrin: 118.3 mcg/dL. Her most recent test results show her totally porphyrins at 212. Does anyone know at what level the porphyrins have to get to before the blisters cease forming? Does anyone have any suggestions on pain management and treatment of the blisters...especially on the ones that have formed under her fingernails?
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I was given the results of my condition as PCT. Prophyria Cutanea Tarda. The pain and blistering are unbearable. EVERY Doctor I have been too only comment..."Well that must hurt a lot. I know nothing about that disease." I can find no one to treat it or give me answers. All I have been told is to stay out of the sunlight.
Can anyone offer me suggestions of where to go to get the answers. Phlebotomy is not an option for me. They have tried during my dialysis treatments and the number count of iron is not diminishing.
Thank you for any help that you may be able to provide me.
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1 ReactionI have the same issues. I lost my thumbnails years ago. And yes, my hands are a mess. Infected at times. I bump a hand and the skin rips. I live in rural Minnesota. Quacks for doctors.Some have accused my wounds of being self inflicted. The only Dr, who knew how to treat me left to practice at the mayo clinic. Dr. here aren't prescribing phlebotomy like it was years ago. I wish all the best. I also have hemochromatosis. They base phlebotomy on ferritin levels and not porphyrins. I wish you and your family all the best.
@colleenyoung Yes, she has completed 5 weeks of phlebotomy. She has been on home dialysis for 4 years - she does treatments 4-5 times per week. Over the past several months, it has been necessary for someone to assist her hooking up and disconnecting because her hands are unusable. I have seen many many pictures of hands of people with PCT - but without exception hers are the worse of any I have seen. They literally look like they have been through a meat grinder.
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1 Reaction@donnasa, this sounds absolutely unbearable. It must be so difficult to see your sister in so much pain.
According to this article in NORD https://rarediseases.org/rare-diseases/porphyria-cutanea-tarda/
"PCT is the most treatable form of porphyria and treatment appears equally effective for both the sporadic and familial forms. The standard treatment of individuals with PCT is regularly scheduled phlebotomies to reduce iron and porphyrin levels in the liver.
@steeldove who has experience with porphyria cutanea tarda (PCT) may be able to provide further insight.
Donna, has your sister been treated with phlebotomy (blood draw)? Is she on dialysis?
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