[ronda102458]

Hi would appreciate anyone with info about this crazy disease to write me. I was just diagnosed recently. I have the aip type. Anyway glad to have this forum. Pleased to meet everyone!!

[Chemar]

Hi Rhonda and welcome to NeuroTalk

I hope others with more knowledge and info on porphyria will be along soon.

[muzzywuzzy]

hi i have porphyria.. my specialists says its chronic, as im under constant attacks, the only thing she can do for me is the blood letting every 2 weeks, as my iron levels are way to high.. i really need the hematin iv drip, but Australia does not have it.. im trying to learn as much as i can about porphyria, but it is very confusing lol.. even the doctors here dont know much about it. they just told me its genetic and all my kids should be tested for it to.. my specialist and my 2 other doctors have never met anyone with porphyria.. so they think im rare and special lol.. i dont feel very special..

[maria219]

I have one type of porphyria, not Acute Intermittent. Lots of info out there, google it ... and I belong to a yahoo health group of porphyria patients. It's so rare, and so complex, and not recognized by doctors in US as much as other countries.

Good luck!

[Darlene]

maria,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways. Check into the following forum for some assistance:

General Health Conditions & Rare Disorders:
http://neurotalk.psychcentral.com/forum2.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Hawkeye50]

I like most of you have Porphyria CEP/HEP ( Lucky me right?) I have a question for everyone. Does anyone elses physician seem to be scared to treat them? Anytime I have a minor flare up and need a need just a few prescriptions for pain or the swelling she always doesnt want to see me and tells me to go to the ER and she will send my files. When I first met this doctor I even explained she cant be timid and what not but she only likes to see me if its just for my blood work and urine test.

[mrsD]

We have a member here with porphyria. I'll PM her to come on to this thread to answer you.

[purplegirl1935]

Originally Posted by Hawkeye50

I like most of you have Porphyria CEP/HEP ( Lucky me right?) I have a question for everyone. Does anyone elses physician seem to be scared to treat them? Anytime I have a minor flare up and need a need just a few prescriptions for pain or the swelling she always doesnt want to see me and tells me to go to the ER and she will send my files. When I first met this doctor I even explained she cant be timid and what not but she only likes to see me if its just for my blood work and urine test.

Sorry to hear that. My daughter's doctor is great. Very knowledgeable about this disease. He sees about 2 cases a year here in Kentucky. She is having an attack this week and getting the hem in medicine. Hate this disease.

[Hawkeye50]

Originally Posted by ronda102458

Hi would appreciate anyone with info about this crazy disease to write me. I was just diagnosed recently. I have the aip type. Anyway glad to have this forum. Pleased to meet everyone!!

Hi Ronda! Things that Ive had help me.

Get a safe drug list and keep it on you there are some drugs that can trigger a reaction and alot of pain involved with it.

I know that you have a different form then me but try to get all the information you can.

I would like to hear from you more about your form I have CEP/HEP so we may have different symptoms.

A

[Mariel]

Hi porph gang, I have Porphyria, not CEP/HEP but HCP (Hereditary Coproporphyria). I too am on the Yahoo group, you can apply to join by going to Porphyria@yahoogroups.com/subscribe. many on that group are very experienced. Our advice to most people is to do the main things: learn what triggers start attacks and avoid them/look in the Files as to what things are main triggers. Main triggers are many drugs (look on safe/unsafe list such as NAPOS), a few foods, and many environmental poisons which we have trouble detoxing because of the afflicted enzyme in our hemaglobin synthesis pathway. (Each type has a different afflicted enzyme). We also have to live a regular paced life and avoid alcohol at all costs.
I don't know much about CEP/HEP and there are few of us on the Porph forum with it. The only porph people who usually have to have phlebotomies are those who have PCT, Porphyria Cutanea Tarda, who do store too much iron.
I myself have other diseases as well as Porph, and I have to have phlebotomies for one of those, which is probably unrelated to Porphyria.
Porph is a neuro-visceral or neuro-psychiatric ailment. The nerves get damaged and affect many body functions. The acute gastric pain many have could be as much due to the nerves being damaged in that area as to other things: but a good diet and avoiding triggers helps that a LOT. Please seek the files at Porphyria@yahoogroups.com to see what foods you should be eating; a good porph diet is specific, not just all-purpose.

Wikipedia has an excellent article covering Porphyria. Surprised how good it is!

Doctors cannot do much to help you except when you are in acute attack. But my doctors are very good at looking up all drugs before prescribing. For instance, my doctor looked on NAPOS to discern which anti-histimine I can take, and what a relief that was to find one I could take! I thought I could take no anti-histimine at all. We can't take anti-depressants at all (except in very very few cases), we have limitations on which anti-biotics we can take, and there are many drugs virtually prohibited for porph patients. I took many of them before my late dx, and thus have nerve damage which gives me Peripheral Neuropathy.
Yes, it is important, Hawk, to discuss having children with your fiancee. And to know what your odds of having a porph child are. It's 50% for most of us, but with CEP I have no idea, it may be recessive. Find out.

Mariel