Patient Comments: Porphyria - Treatment


Have you tried an effective treatment for porphyria? Submit Your Comment

Comment from: Catwoman, 65-74 Female (Patient) Published: August 08

I received monthly IV Panhematin for porphyria for about a year and I believe this helped my sun allergy somewhat. It also lessened the frequency of my bowel symptoms. I stopped the treatment myself.

Comment from: Sten, Male (Patient) Published: January 14

I have had PCT (porphyria cutanea tarda) for over 20 years and have had venesections every 18 months to keep the blisters at bay. I have given up alcohol and have been sober for 3 years now. I have also had hepatitis C for 20 years. Six months ago I finished a treatment regime for my hepatitis C and have had no symptoms of PCT. I am now hepatitis C clear. All I can put my PCT free symptoms down to is a healthy clean liver.

Comment from: kate, 55-64 Female (Patient) Published: January 08

I do not use hematin for porphyria, too many side effects. I usually go to the emergency department when pain is unbearable and getting severe anxiety. They give a liter of 10 percent dextrose at 100 ml/hour and sometimes an amp of D50 as well as Zofran and morphine as needed.

Comment from: Kate, 55-64 Female (Patient) Published: January 08

Glucose loading is extremely effective for porphyria if given with Zofran and narcotic analgesics. Sometimes have to get IV valium to keep stress level under control. Glucose loading is much cheaper than hematin and the side effects are negligible.

Comment from: Jodie , 55-64 Male (Patient) Published: July 02

I’ve had a urinary tract infection for a month now. I’ve finished the course of my antibiotics, however the pain is still there. It’s consistent and sometimes makes me feel as though I’m about to vomit. It affects my sleep and my daily routine.

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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