What Kind of Porphyria Do I Have?

And, does it really matter?   I know that I have an acute variety, because of the seriously painful and debilitating attacks; these attacks require Donnatal, Percocet, or Morphine to control the pain.  Cutaneous?  Not really a big issue.  I can get enough sun to be pink, with no problems.  However, if I get a burn that is painful to the touch, I blister & get very sick.

With all that said, when I was tested positive for porphyria, I was satisfied.  Really, I just needed a doctor on my side, who would state that I had this wonderful disease….this, to keep the medical community from destroying my health in an earnest effort to make me better.  In reality, it did not change my efforts at determining & avoiding triggers.

We have successfully identified enough triggers that I have not had any major acute attacks, in about a year; there have only been a few minor incidents worthy of Donnatal.   However, I still have a general “crappy” feeling & am highly susceptible to catching colds and infections.  Still trying to figure out how to deal with that.   And, the semi-annual blood tests always have flags on 10-12 items.

Anyway, I eventually decided to read the test results & surprise!  I may have AIP, like I thought; but, I also have other porphyrins that are too high.   And, I was not even having an attack, when the test was run.

Uroporphyrins are high; this is to be expected with AIP.  However, heptacarboxyporphyrins & coproporphyrins are even more out of bounds.  Well, color me confused…not, just purple…sorry, it could not be avoided.

Let’s see how this stacks up…

Uroporphyrin – AIP, congenital erythropoietic porphyria, porphyria cutanea tardia (PCT), & hepatoerythropoeitic porphyria (HEP)

Heptacarboxyporphyrin – PCT & HEP

Coproporphyrin – congenital erythropoietic porphyria, hereditary coproporphyria, variegate porphyria

It is just academic; but, I am kind of curious what kind of porphyria I do have.

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2 Responses to What Kind of Porphyria Do I Have?

  1. Tom says:

    Me and my Doctor are in the same boat. I have the symptoms of HCP or VP My porphyrin tests keep coming back with elevation of Coproporphyrin III and slightly elevated Coproporphyrin I and II however I have also had randomly high Heptacarboxyporphyrin. Then last night I had a seizure and my Urine test is showing high Hexacarboxylporphrin . So I am Like WTF. Also my Porphyria Symptoms started when I was 3 months old. I blister and get hives almost instantly when exposed to sunlight but I also have sever Acute symptoms. its like I am the triangle among the squares trying to fit that round hole. My official Diagnosis is Acute Porphyria Type Unknown.

    • Greg says:

      Tom,

      I am sorry to hear about your problems. After my original post, I talked with my hematologist; he feels that I have variegate and that it is not worth the effort or expense to try to narrow it down…it will not affect how I am managing this disease. I had to agree with him.

      Labels are nice, though.

      Hang in there.

      Greg…

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