Cutaneous Porphyria and Lupus and Rashes

Hi Julie, Thank you for posting this and the pic too. Its interesting. I used to have these awful lesions which just wouldnt heal. Some in the most awkward of places. And poor Dave would have to put some dressings on for me, as i just couldnt reach. Thank god at the moment, i am having a clear spell from it. The wierd thing with the lesions though, is they can crop up at any time for no particular reason. Its so unpleasant as anyone can see. My scalp was really bad at one point. They have healed for the moment, thank goodness. I would love to colour my hair and hide the grey hairs, but i am too wary of doing it, in case it sets the lesions off again. I think its better to be grateful they arent there at the moment, than be vane and colour my hair for grey hairs sake, hehelol.

That's exactly what I was thinking! I want to dye my hair again but I think I better wait just in case (or did I already say this earlier? See what I mean about memory issues?)

I get a white stripe if I let my hair go without color right on top of my head (like a skunk stripe) like those older Italian women always get..lol.

But on the bright side, you would not BELIEVE how FAST the sore is healing on the back of my neck! I picked up some of the fancy dancy super duper steroid cream my rheumie said was 100 times more potent than my usual stuff and WOWEEE, it stopped oozing and is all scabbed over already! I'll post a pic in a minute.. (gotta go bug hubbie to take another pic of the back of my neck, haha)

I'll keep you informed about the porphyria tests.. ;D

Hi Julie, Thank you for your post. You didnt say about dying your hair. I do know what you mean about memory though. Mine is alot worse at the moment. I think its because i am in a flare. Its driving me mad not remembering what i have done or said. Today i had to even have a look on the computer to check i was right about the day. I hate being like this. I know what you mean about the white strip. I can see the grey hairs multiplying as i speak sometimes, more and more grey hairs seem to just appear every day. Probably the stress of everything doesnt help. I wish we could tell whether it was okay to put some hair stuff on or not. A friend of mine said try Henna, but when i spoke to the hairdresser they said thats the worst thing i could do. I dont know. They did say they werent saying it just to make some money out of me either. They did say why to not use the Henna but i cant remember now. I suppose i should just be thankful that i actually have hair, seeing as i lost it three times before with the Lupus and having treatments for cancer too. But our hair is something which if it looks good, it makes us feel better. I am so pleased you got some super duper fancy cream to use, hehelol. My doctor gave me some stronger steroid cream which does help. I am having a hot flash. Good job you cant see me, you would probably laugh not out of being unkind. But just seeing me throwing my duvet off and trying to cool myself down. I must look a right sight. I need a punkawallah. Thank goodness, this is not on camera, hehelol. I was going to have a sleep but i feel too hot right this minute, so i thought i may as well reply to some posts. Sorry i have deviated away from what we were talking about. I am so pleased for you though that your sore area is healing abit now. I hope it goes completely for you. Good luck! Bye for now, take care, rest well, speak to you soon, lots of love and huge hugsxoxox