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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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Yes, she is on Plaqunil and the blood letting has been helping get the iron count down. She was over 1000 on her iron count and after 3 months, was down to 400. The dialysis center no longer will allow it at their site. She made arrangements to have it done at a cancer center and just today has decided to give up on that. The pain has won.
She was referred to the Mayo Clinic and was told they wouldn't take her as a patient. We had plans to go to the University of Utah but has decided she has had enough.
She is working with the wound clinic, a dermatologist and infectious disease. The first picture is of her hands last August 2022. The eye was from February 2023. She has 2 fingers with bone infection and want to amputate. She said, NO.
Is anyone dealing with porphyria cutanea tarda?
@chriseliz, I moved your post to this existing discussion:
- Porphyria Cutanea Tarda (PCT): https://connect.mayoclinic.org/discussion/porphyria-cutaneous-tarda/
I did this so you can read previous posts and connect with members like @donnasa @jfmaddog @ouchelp220 @griffin2 and others who have experience with porphryica cutanea tarda.
Chriseliz, what treatment helps you manage PCT?
I have only been diagnosed with PCT for a year I was advised to use SPF 100 sunscreen always. And I am to reapply it every two hours. The only skin I have exposed are my hands and face including my ears which have been affected by the sun. I have had four phlebotomies so far which have brought my ferritin level down. I am scheduled for more. I'm trying to adjust to a different lifestyle
which is difficult at times but I hope to adapt and remain happy.
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