General Question

spykenij's avatar

Does anyone else on here have or know about Acute Intermittent Porphyria?

Asked by spykenij (1831points) November 27th, 2011

I am 99% sure that I have AIP. It’s pretty rare, it’s from a mutated gene and it’s got to do with hematin and electrolytes. I am researching all I can and talking to people on facebook who are very knowledgeable about this, but I want to know some personal stories too. Who goes through what and tell me everything, please?

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8 Answers

asmonet's avatar

Pee in a covered glass, leave it outside on a sunny day – all day. If it turns purple, you’ve got it. Seriously. Not foolproof, but you know… you could always GO TO YOUR DOCTOR IF YOU SUSPECT A SERIOUS CONDITION.

What makes you think you have it?

spykenij's avatar

Please, never assume with me…doctors are involved. Had the official Urine PBG test done at Quest Diagnostics and should have the results back tomorrow. I have been sick for over 4 years and after ruling out everything else, AIP was mentioned, we did some research, spoke to some docs around the country who specialize in it and several online support groups for it. I have most of the symptoms. I am of Scandanavian descent, which it’s more common in for some reason. I did the ghetto piss test yesterday. Peed in a jar, did not cover it though (no one from the support group said to do that) and left it in the sun all day. It didn’t turn purple, it went from yellow to kinda orange, but what scares me is that I’m reading all over the place that sometimes the occuring factor shows up in your urine before, during or after an episode – it’s not the same for everyone. I’m not sure if that is a fact or not though. I should just keep doing it til I either find it changes enough to determine I have it or I snap from slight changes making me unsure. All I know is, I am very sick, it happens too often, I can’t afford all these damn trips to the ER nor all the ER tests (yee-haw good credit score, welcome bankruptcy) and I physically, mentally and emotionally cannot take it anymore and need an accurate diagnosis. I am thinking too much about suicide (not going to do it, so chill and back up off me on that), as it is a very comforting thought. I know they do Hematin infusion and electrolyte replacement/infusion to help with it, but I am in a great deal of pain when I do have an episode. I violently vomit to the point where I can taste my own damn liver. I’m going to also need something for the pain because I cannot learn to live with it, that’s just ridiculous to even consider. It’s just not possible – for 4 years, I tried with no luck and it actually just got worse. In the process now of finding a specialist who can see me before next year because the ones here are all booked. We found a leading specialist in Texas who is willing to work with whomever I end up with as a specialist in my area. I’m having to move back home to get this taken care of properly. Thank God for Cleveland hospitals! The ones in Columbus…SCARY!!! I’m exhausted from earlier and my eyes keep moving all over the place – I can’t focus, so I need to get going, but please…if you know any tips, tricks, pointers, ways to perk up any doctors ears to make them listen and want to assist – let me know. Thank you in advance. I need all the help, support and knowledge about this I can get.

gasman's avatar

It means that taking any kind of barbiturate (old-school “sleeping pills” such as Nembutal) will likely cause a crisis. Before the advent of propofol it was a bigger concern for patients going to surgery, because general anesthesia was induced (prior to 1990s) with sodium Pentothal (aka thiopental), an ultra-short-acting barbiturate contraindicated in acute intermittent porphyria.

I’ve met a few people with AIP and they seemed to be doing fine.

spykenij's avatar

Don’t take barbiturates. I’m in agony, lost more shit and now have to move back with my parents now. I need help. I did the ghetto piss test in a jar, where you stick it out in the sun, but it only went from yellow to orange, not purple or red. I’d like to know if this test should be done before, during or after an episode or are all people different? Is it possible to get negative tests with the ghetto test if you don’t do it at the right time, as far as episodes go? I don’t want to live anymore because of this. I’ve lost several jobs, my girl, my nice townhome, my peace of mind, my last nerve… It’s been like a 4 yr avalanche consuming me and everything I love and had/have. I almost lost my own family due to this. Now they’ve made me come back home so they can help me. They researched this and I do have so many of the symptoms. I just want to be properly diagnosed already.

wundayatta's avatar

Have you received your results, yet? What are they symptoms of this?

spykenij's avatar

If someone doesn’t know what they are doing, which Quest Diagnostics didn’t even know what test the doctor has ordered, so they had to call and get details from their main office, it can cause false negatives. My test showed as negative, but I guess there was a student that wanted to play with my urine, so more power to him and I hope he finds something.

My symptoms occur like this -

Usually having IBS issues 90% of the time; I get so hot, my glasses fog up and I start pouring sweat; cold sweats and chills; slight fever sometimes; my chest hurts from anxiety that creeps in and I can feel my heart beating out of my chest; severe SEVERE abdominal pain that is so bad, it feels like my body is being chipped and shredded to the point where it causes me to violently and repeatedly vomit; I become extremely confused; my heart rate and blood pressure skyrocket – like 176/113 I think was one of my highest levels; I have passed out here and there if waiting forever to get into a room at the ER; only pain meds (Dilaudid – 2mg about 3 times IV or IM, but IV works better or Methadone was used in a 10mg dose am – 5mg dose pm for maintenance to keep it under control) make the vomitting stop; and I become severely dehydrated quickly.

For good measure, here are the know symptoms of porphyria.

Abdominal pain
Anemia: hypochromic,
microcytic, hemolytic
Amenorrhea (absence or
suppression of menstruation)
Appetite, loss of
Back pain
Behavioral changes
Bladder distention
Bowel incontinence
Breast secretions
Breathing shallow or rapid
Carbo craving
Cardiac arrest
Nervous system lesions
Chest pain
Corneal inflammation
Dysphasia (inability or
difficulty swallowing)
Extremeties painful
Facial hair, excessive
Fecal impaction
Gastrointestinal spasms Hallucinations
(high blood pressure)
(dulled sensitivity to touch)
(decrease sodium in blood)
Hypotnsion, postural
(decrease in blood pressure
upon assuming an erect posture)
Ileus (obstruction of the intestines)
Joint pain or stiffness
Limb stiffness
Menstruation often
exacerbates symptoms
Mood changes
Muscle cramps
Muscle pain or stiffness
Nerve palsy
Organic brain syndrome
Panic attacks
Paralysis, partial
Paralysis, temporary Paresthesia (numbness or
tingling sensation)
Peripheral motor deficits
Peripheral neuropathy
Photosensitivity (porphyrins
interacting with sunlight cause
neurologic and/or skin problems)
Respiration, decreased
Respiratory paralysis
Sensory disorders
Skin lesions, blisters or ulcers
Sweating, profuse
Tachycardia (heart rate of
over 100 beats per minute)
Tendon reflexes, absent or depressed
Urinary incontinence
Urine, change in color of
(green, brown or red)
Urine retention
Urine formation, absence of (oliguria)
Vision, changes in
Voice, weakness
Wrist drop

A lot of info on and!/groups/2445760941/. The facebook site has been extremely informative and the people, whether from a different walk of life or not, are all very supportive.

Troublepain216's avatar

I live in Cleveland. And I have AIP. its one of the worst pain ever. Mentally and physically. Go to The Cleveland Clinic if you are in the Cleveland area.

Medic123's avatar

Hi, I suffer from AIP the only treatment that instantly works for me is having Glucose
I was admitted to the ICU in my first attack and out on a glucose drip.. Whenever I feel stomach cramps or any of that sorts, a spoon of glucose every hour really helps

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