Experiences with

Porphyria

[/i] Acute porphyria is a term that includes three similar genetically inherited diseases: acute intermittent porphyria, hereditary coproporphyria and variegate porphyria.

Only an invitro study but Hemin is already used to treat acute porphyria. “Given that hemin has been safely administered as a daily infusion at doses ranging from 1 to 4 mg/kg for 3 to 14 days in the treatment of porphyria [32], it holds significant promise for drug development.”

I have APS and AIP (Porphyria) and I'm on a good handful of meds for medical and mental health things. Has ANYONE heard of someone dancing with both of these beauty queens at once?? I just don't know how I keep getting all the good luck.

I also have lupus and tested positive for porphyria like another poster. I also have eds (elhols danlos). How I’m alive I don’t know. I’m sure I have autism probably from the blood clotting so I guess I’ve made lots of enemies.

In people with a condition called porphyria, these porphyrins naturally build up because of a genetic issue and can cause problems when the skin is exposed to sunlight.

I have several health conditions like IBS w/constipation;COPD w/asthma;hereditary porphyria;mild MS;sickle cell trait;and fibromyalgia! Yea,before anyone comments I Am really f*** up! My worry is that now that I am old docs say I need to go on an osteoporosis medication!

Hi Especially to Kelly in West Texas I am in NJ with APS and all those usual add ons like Lupus but -I also have Hemophilia B and Porphyria. I had Dr.Erkan confirm the APS And had to have 3 surgeries last year at HSS for a fracture. I recently read you traveled to London to meet Dr.

Firstly they thought it was lupus, then porphyria, then a few others chucked in the mix - now I’m finally down to bechets with a small possibility of periodic syndrome. Also, severe autoimmune dry eye.

Here is the specific portion of the article that deals with the subject: "Throughout this lengthy investigation, I tried to interest various IC researchers in porphyria but not one IC researcher would bite. I finally realized the sad truth: I would have to do the work myself.

When the levels came back at what they were, combined with some peculiar skin issues I was having (small, painless, clear fluid-filled bumps on my forearms and hands after being in the sun) she thought perhaps I have PCT, or Porphyria Cutanea Tarda and ordered a 24 hour urine collection test.

He also speculated the cause could be the porphyria (that killed my twin sister at age 36).

Greetings everyone, I'm Nyx from Toronto Ontario Canada I'm 42 and living with multiple medical issues, I have acute intermittent porphyria, polycystic ovarian syndrome, dystonia (unknown type), spinal osteoarthritis, degenerative disk disease, (juvenile) arthritis, type 1 diabetes, chronic pain, and

The itching cant be down to high bilirubin, it must be the porphyria 🧛‍♀️. Dermol and antihistamines doing nothing, any suggestions at all? I will try anything! I'm currently considering the cheese grater....😢🤬 xxx

Then I spent until 2a.m. researching what they had wanted to diagnose me with last year -- which is Solar Urticaria -- because I'm desperate that they rule out the EPP (type of porphyria) before doing so.

I think the porphyria may be in remission as my urine hasn't been red for a couple of months(just a beaut Lucozade colour instead 🤣) and skin seems stronger and less fragile too, fingers crossed 👌🤞 Stacie, (blt's resident vampire) 🧛‍♀️ 😁. Xxxx

Born to the Purple: the Story of Porphyria - Scientific American https://www.scientificamerican.com/article/born-to-the-purple-the-st/

Xxxx 🎅🎅🎄🎄🎁🎁 https://www.britishlivertrust.org.uk/liver-information/liver-conditions/porphyria/

Xxxx https://www.britishlivertrust.org.uk/liver-information/liver-conditions/porphyria/

Below is a link to blt's porphyria page for anyone interested who hasn't seen it, always good to raise awareness! 😉 take care everyone. Xxx https://www.britishlivertrust.org.uk/liver-information/liver-conditions/porphyria/

I don't know where else to post as I can't seem to find any porphyria forums or anyone to talk to with the same thing, I've been in touch with the British porphyria foundation but no reply as yet.