[ewmb]

#1059488

I have not posted in several years. Short history, Graves diagnosed in 2007, RAI finally in May 2009. Feeling pretty good after getting settled on levoxyl even with menopause coming on fast etc.. I know not to blame my Graves for everything. I have started, just today, to get a red, stinging rashy like event on my lower legs and I know that Graves can cause pretibial mexydema. I am really curious as to how it started for others who have experienced this condition. I am shocked at how fast this came on today. I am of course going through all the usual ideas, like new soap, change in laundry detergent etc.. and nothing has changed that way. I am out of town, of course, and hope that someone out there who has had this can please give me a description of how their cases presented and how it felt.

[Robboford]

#1175063

Hi ewmb,
I was diagnosed with pretibial myxdema with Graves’ 14 months ago. I currently use a Steroid Cream every 3rd or 4th day but some of my Doctors are not happy with my continued use. I have scaled down from using it daily and now it is Spring almost Summer down here, the warmer weather is aggravating it and I am using every 2nd or 3rd day. If I try not to use it, the onset of the red rash announces itself by a “tingling” sensation 1st and if I don’t reapply the cream within 6 – 8 hours it is back to it’s red angry worst. For me it looks like I am wearing red socks (I have been asked by another Forum member to post some pictures, but unfortunately I have been unable to do so because the effects (when they appear if I have not applied the cream)) are so maddening – sore, hot, itchy, which then progresses to itchy welts that drive me crazy. I just have to scratch which then leads to broken skin and bleeding. At my last Endo visit he explained to me that both the Thyroid Eye Disease (I have been recently diagnosed) and the pretibial myxdema are related to each other and it is like my body is rejecting my own body parts. (Similar to a patient receiving an organ transplant and the body rejecting it) (eyes and skin). In my case Tsh has been a real issue and was only just detected after 11 months (still very low) and has dropped in the past 3 months. I am off to see a Surgeon in 2 weeks to arrange my Thyroid Removal (will post on this later), which we are hoping will help both the pretibial myxdema and Eye issues. Pretibial myxdema is very rare here in Australia and I am a bit of a side show act when I go to my appointments as a lot of medical professionals are interested in seeing it in real life even when it is not at it’s worst. My Trab levels are also extremely high which is contributing to the eye and skin issues. Good luck, hopefully you can find some relief in which case I would like to hear about your remedy or any relief you might get.
Cheers
Debbie

[Bobbi]

#1175064

Hi, Robboford: Pretibial myxedema is rare everywhere. Only about 1% of Graves patients get it. And, it typically does go hand-in-hand with the eye disease. You and I “won” the trifecta! I have a dermatologist appointment next week, because I think mine has come back from about a 10 year hiatus. ; ( We’ll see.

As for using the steroid creams constantly: the problem is that they tend to radically thin the skin, allowing for infection. It’s a vicious cycle, obviously, because if you are in pain from it, and the creams help to alleviate that, then of course you want to use them.

Pretibial myxedema isn’t always painful – I think it depends upon where the “welts” develop, and whether they are putting pressure on a nerve. And, emwb, I don’t know that “rash” is the appropriate term for it, although that is one that people use form time to time. For me it was thickened, red patches of skin that resembled the rind of an orange.

[ewmb]

#1175065

Thanks for the reply. Did it come on you really suddenly the first time? I thought my legs were prickly from something when I first noticed it. I did try not to touch it today but thought I might try some hand lotion on it to see what happened tonight. It’s made it worse. Maybe from the rubbing? Also the skin seems to feel really tight. I am headed home tomorrow so I hope I can get to someone next week if it’s still around. How long do your flares last? Some of the places look bumpy and some it seems just red. I am far sighted and even with my glasses on I am not sure of the exact look of what’s happening. Bobbi mentioned that her’s looks like orange skin.

I have not had the eye involvement as of now.
My husband takes fish oil for his ezcema and has had some success with that. He has sjogren’s another type of autoimmune disease.

[Author]

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