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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