Anyone out there suffering from Porphyria? It seems really rare and I was wondering what other folks have been through.

Thanks.

Noted your posting, which appears to be outdated, regarding Porphyria. If you are still seeking reliable information kindly reply at your convenience and I will furnish information and hope I can be of service.
Scorpius 1

Hi certainly!

You didn't mention what kind you are dealing with.

Porphyria Types

Acute Intermittent Porphyria (AIP)

Congenital Erythropoietic Porphyria (CEP)

Porphyria Cutanea Tarda (PCT)

ALAD Porphyria (ADP)

Hepatoerythropoietic Porphyria (HEP)

Hereditary Coproporphyria (HCP)

Variegate Porphyria (VP)

Erythropoietic Protoporphyria (EPP) or Protoporphyria

Like Scorpius said, there is lots of good info available out there.

Good Luck!

SJN

I don't know about the original poster, but I'm a male likely with Acute Intermittent Porphyria (AIP) and it is scaring the crap out of me.

I've had a one-time urine sample taken, and it came back positive for porphyria and my symptoms match that of the Acute Intermittent type. I have all of the typical symptoms, and then some, that are outlined by the Porphyria Foundation:

*nausea
*vomiting
*constipation or diarhea
*pain in the back, arms and legs
*muscle weakness (due to effects on nerves supplying the muscles)
*urinary retention
*palpitation (due to a rapid heart rate and often accompanied by increased blood pressure)
*confusion, hallucinations and seizures

I know for a male to have this condition, it is quite rare. I plan on getting a lottery ticket since my odds of having it are about 1 in 100,000 or greater. I try to make light of my situation despite the seriousness of it. With my AIP, it was triggered by infections.

I was originally diagnosed by mononucleosis back on January 9th due to the symptoms I was exhibiting that were inductive of it. You can read in detail about my original idea of my problem being kidney related here (http://www.healthboards.com/boards/showthread.php?t=401755). I had what is now evident as an acute attack on February 2nd, and went to the ER. Then, they didn't find any signs of a kidney stone, treated my pain and sent me home. I had pain for two weeks and missed that much time from work.

Things started to seem to get back to normal until May 2nd; three months to the date I had severe upper right quadrant pain. I was rushed to the ER and stayed for four days. They had found I had passed a kidney stone, but could not identify the type or composition of it. After that I soon developed chronic pain that exhibited itself predominantly as flank pain, with pain under the lower two ribs on either side, radiating into the back. During acute attacks it radiates down my legs, and into my arms.

With each acute attack, it gets worse. My last visit, which was this past Tuesday night, early Wednesday morning they had a hard time getting my pain under control. They overmedicated me that it depressed my breathing and I had to be put on oxygen. I also, not only from the pain medication, was having hallucinations. With each ER visit, my neuropathy-type symptoms are worse then before, and afterwards the pain in my forearms and elbows gets worse. I was diagnosed last year with the neuropathy in my arms being attributed to my work, since I have a sedentary job working at a computer for eight to ten hours a day, when I can work.

As it stands right now, I cannot even sit straight up for more then fifteen minutes without having excruciating pain. If it wasn’t for my family, I’d have been in deep, deep depression over a month ago and given up. I live with chronic pain, usually in the six to seven (on a scale of ten) range. I do not take pain medication, because I do not want to develop a resistance to it, or a false dependency. I want it to be there when I truly need it.

Next week I have an appointment with my primary care physician’s office to try a regular infusion of ten percent dextrose, to see (if I avoid the ER in the meantime) if it helps with starving off more acute attacks. If not, then despite the risks of taking it, I’ll want to try the Panhematin that is available for treatment of AIP patients.

What I’d like to know is if anyone knows of any alternative treatments for patients of AIP that has relieved some of the chronic pain, if not removing it entirely, or if there are any other treatments besides the regular glucose and Panhematin infusions. Once my other tests come back to confirm the AIP diagnoses, I plan on having a permanent central line port inserted by a general surgeon I was referred too, who suggested I had AIP. The permanent IV line would be to help with the regular infusions, and so I could get them at home.

Please, if anyone knows of help or an alternate active online community for porphyric patients let me know. I’m practically at my wits end. Thank you for any help, it is greatly appreciated.

Is there anyone here who knows about AIP, or definitive diagnostic tests for it? I'm so tired about being sick and weak and I want to move on with my life.

Please, if anyone as anything that might help, please let me know! My general practicioner has pretty much given up and is trying to pass me on to my specialist a gastroenterologist. I'm trying to see if maybe a sepcialist of Phorphyria in Galveston, TX can help me.