[greenhaggis]

Hi,

Visited Dermatologist today (could only tell me that she knew of a few lupus skin conditions ) - suspect shes never seen/treated anyone with Lupus (shes a Lt Col/military dermatology specialist)! She says that my Immunologist suspects Porphyria due to the raspberry rash that I got from the sun whilst wearing my jeans.

She was very sweet and took all details and is going to read all my many hospital records. Is also going to try and get St Thoms/Dermatology to try and track my notes from 20 years ago and St Peters from 10 years ago. I think shes being very hopefull that my notes will still be available somewhere in a dark dungeon!

Outcome for the moment is that I'm being tested for Porphyrin levels (blood,urine,faeces) and will have to go to local hospital in next few days!

She said that she would probably refer me to St Thoms 'photobiology dept' to run more tests and studies!

Has anyone with Lupus been seen by the Photobiology Unit/Dermatology at St Thoms?

At least i'm finally being tested for all the other things they forgot to test for whilst busy concentrating on Lupus!

Would be intersted to hear from anyone in the know about Porphyrin!

Love Lesley

 

[oliverisorange]

porphyrins in urine

Hi. I know this post is really old, but wondering how the tests went. I have tested positive for abnormal porphyrins and can't find much information. I've been given two different explanations. I was tested because a reaction to a medication. From what I've researched though, it seems like abnormal porphyrins are linked to a hereditary illness call porphyria which can flare when taking certain medications, liver cancer, or lead poisoning. I also have lupus but have read that porphyria can have some of the same symptoms. Anyone have any experience with this?

 

[KarolH]

I do not have any information on this but I do believe they test for this by placing a cup of urine in the sunlight for 24 hours and if it turns a purple or red color then it is positive.
Not sure but think I remember reading about this somewhere.
Welcome to the site and why not go over to the "Introduce Yourself" section and tell us a bit more about yourself.
Hope to get to know you better.

 

[keebler]

Hi and welcome Oliverisorange.

Starting a new thread is a good idea like Karol has said. That way you will get better results just for you.

Love,
Lyn

 

[greenhaggis]

I don't mind this thread to be used as nobody in past really answered on it.

Urine samples are not sufficient to test for Porphyria...you need blood, stools and urine and they need to be taken without any light getting access to samples for total accuraccy.

There is a special organisation for sufferers of Porhyria online which you can google for more information !