[Ski]

#1071176

I know you’ll get some responses from people who have dealt with it ~ we call it pretibial myxedema, but it seems we’re talking about the same thing. This condition is due to yet another set of antibodies that come along with Graves’, so the activity can come and go as conditions change. Some people never experience it, others are plagued with it. I’m not sure you’re doing yourself any favors by using the steroids sparingly. I think the steroids have a chance to reduce all the inflammation and help the healing to begin, so using just a little at a time may prolong the activity, but I’m not an expert on this by any means. If your dermatologist has not made the treatment rationale clear to you, it’d be a good idea to schedule time for an in-depth discussion.

Do a search on posts for ‘pretibial myxedema’ (search the old board too) and I’ll bet you find some valuable info, at least for keeping yourself comfortable. I understand this itches like CRAZY.

[Mrbshoney]

#1071177

Thank you for the suggestions. I live in an area without access to many specialists, but have seen a couple of dermatologists – they say "hmmmm, interesting. Sorry, I don’t know much about this…" I understand that they don’t have much occasion to see cases here. I have also been to the Mayo Clinic in Mesa and received much the same reaction. It seems we who are distinguished by having Graves Disease are unique…and interesting.

[mamabear]

#1071178

Welcome here!
I am sorry to hear of this problem and that you have not found anyone who knows how to help you.

SKI, gotta question for you. what about patients seeing a Podiatrist for Pretibial Myxedema? Would it make sense or no?

also is it like eczema? Dry, cracked, red inflamed? Not just thickened.

[Ski]

#1071179

I don’t think a podiatrist would be the right doctor for pretibial myxedema. Podiatry relates more to the structure of the foot, ankle and leg. People we’ve heard from here see their dermatologist to treat pretibial myxedema.

The way I’ve heard it described is that it looks like an orange-rind, but the skin is purplish. Raised, itchy. Not dry or cracked, that I know of, but I think it can get that way if it’s mistreated (if you itch it a LOT). You might find some interesting images in a websearch.

[Mrbshoney]

#1019363

I am exactly 5 years past surgical removal of my thyroid – that followed over a year of trying to control the whole disease with medication. So now the thyroid is gone, the TED is manageable, and that only leaves swollen, dark pigmented feet to deal with. Does anyone else have this problem? I am treating with a topically applied steroid – I try to use it only occasionally to avoid steroid-related symptoms. I have had to have my great toenails removed due to terrible in-growing problems. I would sure like to hear from someone that this will eventually go away by itself. Any hope of that?

[mamabear]

#1071180

Thank you for the info.

[Mrbshoney]

#1071181

Ski’s description of my pretibial myxedema is correct – no lesions or cracking, but it does get very dry if not hydrated with lotion. I have been wearing strong compression hose to encourage circulation in my legs in an attempt to flush out the protein that is deposited under the skin. The swelling is not like regular edema (from excess fluid), but is firm and balloons up without the pressure. I appreciate all of your suggestions.

[npatterson]

#1071182

Ahhh! One of my favorite subjects…as I scratch and rub in the Prednisone! I am 20+ years post-ablation, but I still get the "stuff on my legs" periodically. I am surprised that Mayo didn’t nail it, but not at all surprised that other practioners had never seen it. You mention your feet, rather than your shins. That may be what is confusing. Biopsies can be done to definitively differentiate/diagnosis it.

It is another of those "antibody" events. It is the same antibody that affects our eyes, so I can usually soothe myself that it isn’t my eyes, at least. In the early years, I had both going at the same time.

Prednisone is the first line of treatment, and you won’t get systemic symptoms if you are a) applying it topically, or b) aren’t on large doses of if for many months or years. One thing that has helped, and I have had three different doctors recommend it (including our Medical Director) is to apply the cream at night, and really rub it in. Then wrap your lower leg in Saran Wrap, put it long sock on, and leave it on all night. Several nights in a row can make a big difference. I have been on Pred-Paks a number of times.

It can get more serious, but for the most part is a HUGE annoyance. We had a great Dermatologist speak at one of our conferences in Louisville.

[Mrbshoney]

#1071183

Nancy – at last someone who has "been there", it seems a little rarer than other symptoms of the disease. I did start this with a little apparent swelling in my feet and a bad case of the orange-peel skin on my ankles and about halfway up my legs, all the way around, not just on the front. The legs finally eased off and now the rash is concentrated around my ankles (and up about 4 inches above them), but the protein deposition is severe in my feet. I have grown 2-1/2 shoe sizes, and my big toes are so swollen that my physician fears I might lose them. Prednisone doesn’t touch this – I use Ultravate, under plastic, every night for 5-7 days and then have to do a taper to stop. I’m good for a few days (still 2-1/2 sizes too large for my regular shoes), then the hard skin returns.

I am also thankful that this is not concentrating on my eyes, and also that itching is not too much of a problem. I sure was hoping to hear that it might someday disappear completely…

[bradybunch6x1]

#1071184

I wish I could be of some help, but I’m not. I’ve suffered from it for over three years now. My doc gave me all kinds of meds, and it hasn’t helped me a bit. Mine is so ugly. It has started in the tops of my feet too. I couldn’t imagine it going to the toes, I’m praying it doesn’t get that bad. I have huge large bumps on my lower part of my legs going to the back, and then the shins are sold as a rock. It does’t bother me, but I have found that it burns alot faster than the other skin on my body…..has anyone else noticed that?
Valarie

[mamabear]

#1071185

I have no advice, just wanted to say HUGE HUGS to all of you who suffer this. I thought my dd4 might be suffering this but from what you all say it doesn’t seem like that but just eczema. Either way she is going for testing during her annual exam this to make sure that there is no thyroid issues. Actually oldest just had thyroid checked and the other 3 will this year during their annual exams.

Again big hugs to everyone.

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