[greenhaggis]

Does anyone know of "Porphyria cutanea tarda"?

Visted a dermatologist yesterday and she is now looking into why I am photosensitive (many types apparently). Shes not really up on Lupus but says that she wants best treatment can be given for photosensitivity in conjuction to any Lupus medications. She feels that people should be given better advice and treatment for their photosensitivity issues and can get more indepth diagnoses done!

She says that it is caused by imbalance of things in blood and that other non-lupus people are photosensitive too. Lupus sufferers are just more prone to photosensitivity!

Outcome is that I'm firstly being tested for 'PORPHYRIA' then will be referred onto a photobiology unit within Dermatology based at St Thoms.

 

[Clare.T]

Hello Lesley
This is an amazing development!
I have read about it and come across a couple of people on line who have it along with lupus and also somebody who was diagnosed with lupus but in fact had haemochromatosis ( iron overload).
I have heard of somebody who had phototesting at St Thomas to get a better handle on her very extreme photosensitivity but I can't remember who she was or where I read her account.
By the way I think antimalarials have to be used with caution with the porphyrias but I am sure you will get advice about that.

http://dermnetnz.org/systemic/porphyria-cutanea-tarda.html


I am waiting for the next installment !

Cheers
Clare

 

[greenhaggis]

I will definately keep updating on this - hoping of course I dont have it! Even if I dont they will refer for more photsensitivity tests.

I think what triggered the test was the fact that my rashes have increased using Plaquenil!

Lesley
As I have Anti ds-dna positive for Lupus plus many other symptoms, I'm not sure whether SLE diagnoses will change, you never know though!