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Doctors' Answers to "Frequently Asked Questions" - Porphyria


These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

[posted 11/23/1999]
Question: what do you know about the use of phlebotomies which I used as a treatment for porphyria - it helped my pct (heal blisters) from UV rays. I am told it would create more pain ( problems w/ heme production and creat porphyria) if used as a treatment for pain which I attribute to CoproHereditary symptoms. I moved to Oregon from New Mexico and the UV symptoms seem better but I have worse pain and swelling from toxin(porphyrins) Copro?

Answer: I've never seen this used as a treatment for any of the porphyrias.

[posted 08/13/1999]
Question: I need to know where I can get a list of drugs which are porphyrogenic and non-porphyrogenic.
I exhibit porphyria type symptoms and was told I may have a type of pseudo-porphyria, porphyrinopathy or porphyrinuria.
(My porphyrins tests were normal with the exception of one slightly elevated, but these tests were done after all the acute symptoms had long subsided).
I need several medications for different medical conditions but my physicians are not very aware of what may or may not be a
porphyrogenic substances.
Thank you for your help.

Answer: Known problem drugs are alcohol,barbituates,carbamazine,danazol,ergotamine preparations,synthetic estrogens and progesterones, glutethimide, griseofulvin, meprobamate, methylprylon, mephentoin, succinimides, and valproic acid.

Porphyria [posted 8/6/98]
Question: What is porphyria? All I can find is that it is has something to do with the breakdown of hemoglobin. What labs need to be obtained to determine if a patient has this disorder?

Answer: Porphyria is an inherited disorder of hemo biosynthetic pathways. They are loosely classified into hepatic or erythropoietic. There are several different types: ALA dehydrase, acute intermittent porphyria, hereditary coproporphyria, varigate porphyria, porphyria cutanea tarda - these are hepatic. X-linked sideroblastic anemia, congenital erythopoietic porphyria, erythopoietic porphyria - are the erythropoietic types. Diagnosis can be difficult and needs to be done during a "crisis". Urine for coproporphyrins, ALA levels, and uroporphyrins are the usual tests. The difficult part is to suspect it in the first place and do the correct tests while the patient is having symptoms.

Antidepressants Use In Porphyria
Question:I have a blood disorder called porphyria. my doctor has suggested that I try one of the serotonin related antidepressants because I am showing some symptoms of depression and am also coping with chronic pain. I know that some drugs and hormones can aggravate porphyria and we are having difficulty finding information about this regarding the family of serotonin related antidepressants. I do not want to worsen my porphyria, the attacks are painful, problematic and take a long time to heal. I would certainly like help with the other problems though but am wary of the try it and see approach. Any info you might have on this would be very helpful in making an informed decision.

Answer: I could find no information on any interaction of SRT anti-depressants and porphyria. Porphyria is an inherited disorder of metabolism due to overproduction or overaccumulation of porphyrin products. Porphyrins are ring structures generally used in blood synthesis. It is triggered by many drugs including sulfonamine antibiotics, alcohol, barbiturates, many seizure medications, griseofulvin, and ergotamine products. There are many subgroups of this disease depending on the defective enzyme or metabolic step.

Capgras Delusion
Question:Some of the porphyries can cause neuropsychiatric symptoms. How often does it cause delusions? I'm most interested in "Capgras Delusion," the belief that one's spouse (or other important person) has been cloned and replaced by a substitute no other departure from reality is present, nor any paranoia about this substitute.

Answer:Most of the porphyries produce pain and occasional confusion. I've never seen this particular paranoia. I'd check with some of the world experts Robert Desnick, MD Ph.D. Mt. Sinai Hospital New York is one.

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