Porphyria Support Group

The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). The hepatic porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, seizures, and mental disturbances, including hallucinations, depression, anxiety, and paranoia.

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deleted_user 10/09/2011

Hi Everyone, I have been suffering horribly from gastric distress, and neuropathy and I have every gastric test known to man and they can't find anything. I just recently went to a hematologist and he only tested for B12 and some other things, I am not sure if he tested for porphyins. My neuropathy symptoms(tingling, numbness, tremors in left hand and right leg) have been associated with b12 deficiency that I have, however my last blood test showed normal and the neuropathy is still very active. Can I ask what some of your symptoms are, because I am very interested in having this condition considered. I happen to run across an article online that said many MS patients are misdiganosed, that they actually have Acute Porphyria instead. When I looked up the condition, I was blown away by the symptoms. I have them all except for the red urine, which they say is only in severe cases, and I don't vomit. I haven't vomited since I was small child. Why I don't know. Sometimes I think that makes my symptoms worse, because I can't eliminate anything. I have suffered terrible constipation for years, and I have had digestive problems for as long as I can remember. We thought when I turned 40 and discovered that I had Celiac Disease that was going to end all my misery, but I hasn't. Sooooooooooo please, anything you can offer, will help me. Also include what has worked for you in dealing with the condition.

Thank You
Penny

deleted_user 10/27/2011

Hi Sowie,

You have my sympathy and understanding if you have porphyria, I was diagnosed in 1995. Will you trust me with your email address, private messages are safe, and I can point you in the right direction.

Blessings,

Mary - England

deleted_user 04/08/2013

I am new too and don't understand this!

deleted_user 11/07/2013

Sowie,

I have acute porphyria & my urine has only been red/purple a couple times. I have been hospitalized several times & have been positively tested (3 porphyrins were flagged high).

Finding a reliable doctor is extremely difficult. My hematologist has some knowledge. I was surprised to find a dermatologist that knew quite a bit about the cutaneous types. I saw him because of a strange rash; he knew nothing about acute porphyria. I also found a neurologist familiar with porphyria; he stated that he sees porphyriacs when they have reactions to anti-biotics. And, my dentist is familiar with porphyria and chooses the anesthetics accordingly, when I need work.

But, it is really up to you to figure out what your triggers are & establish a safe diet.

Things to consider avoiding right off - alcohol, fried foods, cucumbers, dark grapes / juice / wine, almond milk, fructose, maca, caffeine. Keep your carb to protein ratio very high; eat a lot of carbs. Really cut out fats, as much as possible.

For attacks, use glucose (powder or tablets are readily available), magnesium (magnesium citrate from health food stores or epsom salts), pain killers, and rest. Pray.

Greg
myporphyria.com

deleted_user 11/07/2013

I have Hemochromatosis & VP and when they treat the HH with a Phlebotomy it triggers the Porphyria, red urine, shortness of breath, inability to walk and then just pass out. If I am treated with IV Hematin after the Phlebotomy, I can avoid all these unpleasant symptoms.

DIMMPLES22 04/12/2014

I WAS RELEASED FROM THE HOSPITAL A WEEK A GO WITH NEUROPATHY IN MY LEGS AND VERY WEAK.I HAVE ALL THE SYMPTOMS OF A.I.P.,BUT HAVE NOT BEEN DIAGNOSED. I WILL START WITH THE FEELING THAT I HAVE A BRA ON TO TIGHT,THEN NAUSEA.BY THIS TIME I AM TRYING TO STOP THE ATTACK BY USING SUPPOSITORIES AND SLEEP MEDICINE,THEN I WILL THROW UP.WHEN THIS HAPPENS(THROWING UP I MEAN) THEN I HAVE TO GO TO THE I.R. WHERE THEY GIVE ME IV.AND SHOTS EVERY 3 TO 4 HOURS FOR THE NAUSEA AND VOMINTING.IT IS TERRIBLE.FROM 5 TO 7 DAYS I AM FULL OF PAIN AND NAUSEA THEN I WILL HAVE WHAT IS KNOWN AS A SPONTANEOUS RECOVERY.I WILL BE FINE UNTIL ANOTHER ATTACK,THE THING IS THOUGHT IT RUNS UP MY BLOOD PRESSURE AND I HAVE HAD 3 SIEIZURES AND THE ATTACKS ARE COMING ABOUT EVERY OTHER MONTH AND THEY USED STAY AWAY FOR YEARS.I HAVE REFLUX VERY BAD.I TAKE THE PURPLE PILL,FOR WHAT GOOD IT DOES.I HAD SURGERY FOR REFLUX CALLED NISSAN SOMETHING AND THE ATTACKS ARE WORSE SINCE I HAVE GOTTEN OLDER (65).MY BLOOD PRESSURE IS HARDER TO CONTROL SINCE I AM OLDER MY KIDNEY FUNCTION GETS WORSE AND NY LAB VALUES GETS OFF THE CHAIN AND WITH ALL OF THIS MY LEGS SWEEL,AM TOLD BY THE SPECIALCIALIST THAT THIS IS LYMPHEDEMIA AND I ALSO HAVE MULTIPLE MYLENOMA .OUT OF ALL OF THIS (OH THE NEUROPATHY)THE PORPHYRIA IS WORSE ON ME..IT WOULD BE SO NICE IF I COULD BE POINTED IN THE RIGHT DIRECTION'

DIMMPLES22 04/18/2014

DOES ANYONE KNOW HOW THE DRUG MAGNESIUM DOES TO HELP PORPHYRICS.THE LAST TWO TIMES THAT I HAVE BEEN IN THE HOSPITAL MY MAGNESIUM WAS LOW. THANK YOU!!!!!!!!!!!!

julie6923 02/04/2015

I am not sure about Magnesium. I used to think it worked, but in recent years I am not sure if it does, and even wondered if it made my symptoms worse. (I have never been diagnosed, but have had all the symptoms of AIP and possibly some skin effect for decades). Just recently I wasn't even sure it was worth taking Magnesium for my stomach pain, and not sure if the pain is helped by any kind of antacid, it is a pain that radiates into my back and neck and jaw and chest pain, and often the first symptom before I get tachycardia.

jimnca28 06/17/2017

if you get red urine run to emergency room ihad that convulsions excess sweating eeks those are late signs and have caused severe damage good luck and peace on

MississippiGirl 11/13/2018

People who have porphyria attacks often get hypomagnesia, or low levels of magnesium. when I have an attack (I have Variegate Porphyria) I take 2000 mg of magnesium, push sugar, pain and nausea meds, and fluids. If I start vomiting it's time to go to the ER for IV Dextrose. With every attack there is a chance of worse neurological damage, so prevention is key. Having a diet heavy in carbs is important; do NOT try the Atkins or keto diet!

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