Et and Rash

[goldenvision]

I am 68 yr old man and have had ET for 20 years and have been on Hydroxy for 17 of them.

I have had a rash for 5 or 6 years on my face sometimes hardly noticeable but others a bit more, which GP diagnosed as Rosacea but I am not so sure as I dont get the redness as such but get small dry red patches some of which lasted for a few years and others not so long, they are ooften itchy. Have tried different creams etc. but no difference. Was thinking of using suncream every day instead of the moisteriser I use to partly hide it now to see if that helps, although I dont get much sun and use lotion if out in it for more than very short spells.

Anybody with similar had any success with any treatment.

[bordeauxgirl]

Hello Goldenvision, Love the name first of all.

I don't have ET rather PV, but I too have had rashes after Hydroxy for the last 6 years, but on my shins, very itchy and sometimes stinging, scratched so much it bled, I was treated for 4 years by the local Dermatologist with every know cream / ointment known to man , nothing worked, I even spent two summers attending the hospital and stood in a UVB light box. Didn't work. I 'respectfully asked for a second opinion! So he sent me to UK hospital to be 'inspected ' by his team , I was told he ran the group and I though well that's going to be a waste of time. But they (12) dermatologist's came in inspected my legs and after two weeks came up with the conclusion Apply a coating of ointment, I think it was 'Diprosone' then wrap my legs in Clingfilm.!!! After I stopped laughing I thought well here goes, obviously you can't wrap your face in it but there are ways around it, small squares and tape to hold it in place. It has worked for me. 12 months free from the rash, but now I notice the rash is appearing again in smaller sizes. Thank goodness it's winter I now have insulation from the cold. I don't know if you can use this method, it's just for your information. Good luck June.

[goldenvision in reply to bordeauxgirl]

Thanks for reply will check it out

[ksos]

Hi -- I'm 67, have ET and have been on HU for almost three years. Not long after beginning the medication, I started to get a rash on my right cheek that comes and goes. At first, It looks an outbreak of bad acne and in a few days turns into small, dry patches that last for weeks. In the very later stages it looks a little like Rosacea, but it isn't. I haven't talked to my doctor about it because other things have had priority in our appointments, but reading your post, I think I should.

FWIW, At first I tried anti-acne medicine but that didn't do anything. A few months ago I tried Neosporin - a basic anti-bacterial ointment that helps heals cuts and scratches - simply because it's what I had on hand. That actually did shorten the time the breakouts lasted, so I've kept using it. I don't think it's a viable long-term solution, particularly if the situation gets worse, but it's something -- and again, points against it being Rosacea.

Anyway, just wanted to say that my condition relates to what you've described and I believe it's due to using HU -- and I hope you find something that helps! If you do, please share.

thanks and best to you,

Kim

[goldenvision in reply to ksos]

Hi Kim

Yes it sounds just like the rash I get, like you I should see my GP again and ask to see a dermatologist. I use moisturiser for the dry skin which helps but the rash is always there with some patches worse than others and shows more when I am hot.

Good luck.

[ksos in reply to goldenvision]

You, too. It's only in reading your post I've realized how I should pay attention to this symptom -- as I said, other things had my attention and this seemed comparatively minor. But everything matters. So, thanks for posting! And let's keep sharing whatever we find.