Porphyria?? I have APS and now have been diagnosed with Porphyria.

[Ilovemyfamily]

Anyone else have porphyria?

[MaryF Administrator]

Hi there, this is not one I know, but I did find this for you: porphyria.org.uk/ Are you in the UK, if not there is one in USA! porphyriafoundation.com/ I can't personally vouch for either, but just keen to give you some information, until another member comes up with something!

and also this paper: clinicalkey.com/topics/hema...

MaryF x

[daisyd]

Purple urine I know is one of the symptoms, I have heard of it before. I know the people who suffer from it can't have the morning after pill. Useless information ?

[Purpletop]

I don't but before being diagnosed with lupus last year I looked into porphyria as a possible candidate for my symptoms (neither my GP nor my hepatologist at the time thought there is anything wrong with me other than anxiety and sphincter of Oddi dysfunction - it turned out to be lupus).

Going back to porphyria, I had tests for it, I remember that the samples have to be shielded from light and heat and done ASAP in the lab. But it appears that I don't have it, though I can never fully trust a regional lab to check for this properly.

There are specialist clinics in London for porphyria and under the NHS rules, if you have a rare disease such as this you are entitled to specialist care, so don't be afraid to ask your GP to refer you there to get the best advice.

Here's a link to the British Porphyria Association and a leaflet about porphyria porphyria.org.uk/Assets/BPA....

There is also a very useful forum for rare diseases where porphyria is discussed - it is the Genetic Alliance group on inspire.com. It is mostly US but very useful to check symptoms and treatment.

All the best!

[pixeltjie]

I suffer from porphyria variegata. What do you want to know, because I have done extensive research on porphyria, and have had acute attacks in the past where I had to be hospitalized. These acute attacks can kill, and you have to know the triggers. One thing I really want to warn you about, is STAY AWAY FROM HIGH PROTEIN DIETS! You need to keep your blood glucose under control, ie constant, no peaks and lows.