I don't understand the diagnosis

[mkh9]

Hi, sorry for the long post. I have had eczema on my legs and hands for years. I have been putting clobetasol ( extra strong steroid topical) on both legs and hands for years off and on. Then I had a small pink band with no bumps on my ankle for a number of months so we put some more clobetasol and it became less pink but didn't go away. It takes two months to get an appointment here in San Diego for a dermatologist consultation. So I saw my family practise doc and he said it was eczema. I was able to get into see a dermatologist PA and he said to put the clobetasol on my legs for a week then put  (lower grade steroid oinment) alcometasone for two weeks. I did the one week clobetasol and then at day 5 of the alcometsone I woke up itching really badly and unfortunatly scrated the leg up. It looked really bad in the morning. It had changed to dark purple and the legs, ankles and feet had swollen. It also looked like all the pores were deep red or purple on my legs. I went back to the derm. PA and he said stop the steroid. PUt on an ointment and call him if there was any fever or pain. There is no fever or pain still but it got worse and started getting some small blisters and oozing yellow fluid. The PA thought I might have vasculitis. He had a dermatologist peek at it for one minute (I had no appointment with the derm) and the derm said I have lipodermatoschlorosis and to  wear compression stockings the rest of my life and walked out. He never did talk to me only to the PA.  Beside it being rude, I don't know why they don't think I could have an allergy or a side effect of the clobetasol. I have read many reports of that happening. Also, my hands are now breaking out with blisters (eczema) in places I never get it. I do think it is a steroid problem rather than the vascular problem. Why else would it break out just when I put on the steroid.  I don't understand. The derm didn't want to do a biopsy because the leg is oozing serous fluid and looks too bad. They also have a ultrasound that can tell if there is a veinous problem but they didn't offer it to me. I am now wearing some lighter compression stocking because I'm too swollen to put on the tighter ones. The color has changed from purple to red and is less itchy. Has anyone experienced the steroid problem like this or a problem like this?
thanks,
mkh9

[mkh9]

See my other comment. Also, I just looked up cyproheptadine and it does cause light sensitivity. I started this drug about 6 months ago and have been increasing the dose to get to the clinical level recently. I wear long pants and sock underneat. So, I don't know how the sun got through? They are 87% cotton and the rest lycra, and and I don't know how much light can get through those?Intersting finding. Thanks so much. I will have to bring that up with these doctors as no one could figure out why I have the pink band, duh. So I probably go treated for nothing and now have this contact dermatitis due to the high potency steroid. Awful!
mkh9

[mkh9]

thanks for the info. I don't take haldoperol but I have taken Klonopin for my migriane variant and also cyproheptadine. I don't know if these cause that kind of reaction but I'll look it up. It started a year ago and it didn't respond to steroid at the time. More recently when this PA gave me the steroid again it worked but then I think I got rebound contact dermatitis or delayed hypersensitivity.  I agree, the first dermatologist may have been a Harvard grad but he was a jerk and also didn't seem to make sense that I would have  a rare disease rather than hypersensitivy when I am allergic to many drugs and detergents. He didn't look at my history  so what do you expect? mkh9

[caregiver222]

A pink "band" with delineated edges is a common side effect if many drugs, specifically psychiatric medications such as haldoperol. Generally the band develops above the sock line and below the pant's line. The drug causes light sensitivity, and because the sock and the pant cover portions of the skin a pink band develops. Many physicians who have obtained their credentials by sending in cereal box-tops do not recognize the etiology treat this disorder with steroids.

[mkh9]

Thanks Ricobord for all your comments. I can't use "cheap" jewelry etiher. I get balls in my earlobes and it hurts. I haven't been wearing any makeup or skin products for a month and also no perfume and no jewelry. But I noticed that I always wear cotton socks and below the sock line the ankles are white and look good and above the sock line is where I have the problem. Maybe it is something in my pants I wear often but i would think it would make the whole leg go pink and not just around the ankle, unless that area is more sensitive? Yes I should get tested for more allergies. I am so tired from waking up itching. I slept 4 hours one night and 5 yesterday. I haven' t slept well in a week or two. I am on two antihistamines too. I hope the steroid topical doesn't give me a problem. I am allergic to mold too. I still think it maybe something in the last steroid (it is a different class than this one). The carrier may have something in it. I noticed I can't use sunscreens either and I never had a problem with those before. Yes I can try a journal. I use one for my back and migraine problems too.
thanks ,
mkh9

[Ricobord]

I have had both scratch allergy tests and blood tests in my life. The scratch tests were useful when they were positive.  They weren't useful when the doctor was sure I had mold allergies, but all 12 kinds tested turned up negative. T

he blood tests are supposed to be very accurate and better for testing food allergies.  Skin allergies can be tricky to pin down.  They don't always occur immediately after exposure to the allergen and they don't always go away immediately after the allergen is gone.  

It took me a year to figure out I had developed a nickel allergy.  My father mentioned it, as he developed one at an age about 10 years older than me.  The skin under his wedding ring was always red and peeling. Then, a bit later, he found that his watch was irritating his wrist.  He ended up being diagnosed with "excema" for clawing his left arm until it was covered in little scabs.  (It's okay now...no metal touches his body anymore.)

I had itching and swelling and redness about 2 inches above where my watch would sit and it spread up my arm almost to my elbow. It would itch the worst at night, and I certainly didn't wear a watch at night. When I finally guessed it was my watch(es), it took a month to stop itching after I stopped wearing them.

I have never been tested for a nickel allergy, but I can't wear most cheap earrings, watches, or other jewelry. Only the good (expensive!) stuff now, which means I don't have much. ;)

That is great that you trust this dermatologist. Maybe he'll be willing to test you more in depth for allergys.  In the meantime, you might consider a food diary where you also log skin condition.  

I had a college roommate with lots of skin sensitivities and she had to figure out by trial and error which personal products she could use.  It was amazing what would make her itch, especially fragrances.  You could have an allergy to a chemical for which the dermatologist has no test.

[mkh9]

Sorry I just got this reply from you. I don't know why I didn't get a notification. Thanks for all your suggestions. Anyway, I did get allergy tested for all the common things. I was negative except for mold. I think I will have to delve into the allergy situation more.  Do they have a first line of testing and the a second line those are negative? Which is better a blood test, skin test or patch test? I went to my FP doctor today to get some direction and he saw my legs and thought it was hypersensitivity or allergy. He called in their dermatologist in and he said it was definitely Not lipodermatoschlerosis. So, I am supposed to go back on a mid strength steroid and protopic and then soak briefly in epson salts to get the flaky skin off and then end the day with vaseline. I appreciate your suggestions. I trust this dermatologist  because it makes much more sense to have contact dermatitis than a rare disease and it doesn't really look or act like the LDS. I am allergic to many topical antibiotics and other things too.
thanks,
mkh9

[mkh9]

Sorry I just got this reply from you. I don't know why I didn't get a notification. Anyway, I did get allergy tested for all the common things. I was negative except for mold. I think I will have to delve into the allergy situation more.  Do they have a first line of testing and the a second line those are negative? Which is better a blood test, skin test or patch test? I went to my FP doctor and he saw my legs and thought it was hypersensitivity or allergy. He called in their dermatologist and he said it was definitely Not lipodermatoschlerosis. So, I am supposed to go back on a mid strength steroid and protopic and then soak briefly in epson salts to get the flaky skin off and then end the day with vaseline. I appreciate your suggestions. I trust this dermatologist  because it makes much more sense to have contact dermatitis than a rare disease and it doesn't really look or act like the LDS.
thanks,
mkh9

[gymdandee]

Also try Emu oil! My daughter has been using it for my grandsons eczema she said it helps.

[Ricobord]

Sorry to hear about your skin!  And rude doctors are always exasperating.

I was also going to suggest figuring out what it is you are allergic to.  Avoidance of the allergen could negate the need for steroid creams.  

A relative had excema as a baby and the doctors didn't think she was severe enough to test her (I never understood that!). It took years to figure out through trial and error that oranges and eggs cause her outbreaks. As long as she doesn't eat either one, her skin is clear.  I have another relative who would only break out with excema after visiting her grandmother. They're still not sure what the cause is, but she doesn't eat much there anymore. (The idiot pediatrician she was going to told her parents that it was a nervous habit and they just needed to scold her every time she started scratching.  Poor kid.)

[mkh9]

Thanks for your reply. The doctor I saw had both dermatology and cardiovascular specialist. I wonder though why they don't believe it could be a side effect of the clobetasol. Clobetasol has side effects of atopic dermatitis, erythemia, pruritis, and a bunch of other stuff. I find it hard to believe that all of a sudden after putting on the clobetasol that it isn't a steroid flare. My hands started breaking out after that too. So, I guess I have to do the sonogram to prove it to myself as I can't get a real appointment with a dermatologist for 2 months. I have used Eucerin plus hand cream on my hands and legs for a long time and it really keeps it at bay. Most of the time. I have tried to rule out many things and I do biofeedback excercises every day as well as imagery.I also take the fish oil  you mentioned for years. I have a back injury so I can't lift my leg to get into the tub ( which I could) so the oatmeal bath is out. Well, anyway thanks for the info.
mkh9