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Porphyria Cutanea Tarda (PCT)

Blood Cancers & Disorders | Last Active: Sep 15, 2023 | Replies (11)

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@griffin2

What treatment are they giving her has she tried hydroxychloroquine?

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Replies to "What treatment are they giving her has she tried hydroxychloroquine?"

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.