Patient Comments: Porphyria - Treatment

Question:Have you tried an effective treatment for porphyria?

Comment from: Chris in Indiana, 45-54 Female (Patient) Published: September 26

In 1995 I was diagnosed with Porphyria Cutaneatarda. I had weekly phlebotomies for 5 months and kept my Hgb at 8.0. Because of the anemia, I also was diagnosis with Pica as I craved ice and chewed an 8 lb bag every day. I have not had any symptoms/problems since until now. I am starting to get blisters on my hands and arms again as well as discolored urine. I will probably have to start with weekly phlebotomies again.

Comment from: HCPgirl, 35-44 Female (Patient) Published: July 26

I have Hereditary Coproporphyria and I have to have Panhematin treatments every three to five months. It really helps, but it is very expensive.


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