Help! Itchy rash on my hips

Zizzle · Post by **Zizzle** » Thu Jan 13, 2011 9:16 am

I've developed a mild rash with an intense need to scratch the outer sides of my hips and upper thighs in the past few days. It may have started with jeans I wore 2 weekends ago - I'm allergic to nickel and the metal grommets on these tight new jeans were pressing against this area causing an allergic rash - however the rash cleared up. I wore older jeans last weekend with no reaction. The need to scratch is intense, and any pressure from laying down or clothing seams (even underwear!) makes it worse. It looks like pink permanent goosebumps and has a waxy feel.

This happened to me once before, 6 years ago after my son was born. I was 2 months post partum, and after wearing a pair of jeans with exposed metal grommets on the inside, the rash started, and snowballed, to eventually cover 50% of my body (buttocks, back, hips and thighs). It was misery for 9 months and no doc had any answers. My OB/GYN thought it was simply an itch-scratch syndrome, or an allergy to my own breastmilk

. A winter trip to Florida resulted in a malar rash on my face and sun sensitivity. That was when my sky-high ANA was discovered, but not enough other Lupus antibodies to suggest a diagnosis. A biopsy done in the late healing stages of the rash showed excess Mucin deposition and nothing else. Does that suggest anything?

My LC seems to have flared in recent weeks, although the trips to the bathroom are still minimal (2-3 day). My diet hasn't changed much, so I'm disheartened by the flare. Stress has increased at work, but not at home, so I think I'm managing OK. The one variable I question: My daughter has a cold and strep throat, my husband has a severe cold, and I have absolutely nothing! Everyone around me is sick, and I am yet to get the sniffles this winter. Could my immune system be working overtime to combat all the bugs I'm exposed to, thus activating the abnormal immune responses in MC and my autoimmune rash??

If the symptoms don't snowball, should I see a doctor for a biospy anyway? The first time I had this rash, I was given all types of steroid creams to no avail. However, I was breastfeeding so I never tried prednisone. I'm using my husbands steroid cream as of today, but I don't expect any improvement. Would a short course of steroids be warranted before this becomes another 9 month ordeal?? Would a trial of Endocort possibly help?

I don't know what to do!

Post by **tex** » Thu Jan 13, 2011 9:54 am

Hmmmmmm. Well, right off the bat, I suspect mast cells.

Recent studies have suggested that mast cell numbers are increased in the skin of patients with cutaneous mucinosis and that these cells may have an important role in angiogenesis and production of mucin.

http://journals.lww.com/amjdermatopatho ... _in.7.aspx

Since both the lining of the intestines and the skin are epithelia, with many similar properties, yes, I'm guessing that elevated mast cell activity in your skin is affecting mast cell activity in your GI tract, to exacerbate your MC. I'm not a doctor, so I can't offer any medical advice, but if I were in that situation, I would try an H1 type antihistamine, or a mast cell stabilizer.

Tex

Zizzle · Post by **Zizzle** » Thu Jan 13, 2011 10:08 am

Hmmm, hadn't thought about mast cells. Thanks Tex. You are referring to Zyrtec or equivalent antihistamine? How many days would you try it for?

Oh, if only I could cure my MC with a little Zyrtec!!

What puzzles me is that other than the nickel allergy, I'm generally a non-allergic person (no hay fever, etc)

Wow, now that I'm reading about this and seeing pictures, I'm wondering why none of my docs suggested papular/cutaneous mucinosis to me? I see it's rare, but it seems like an EXACT match for what I experienced 6 yrs ago. Maybe because I refused heavy-duty drugs due to breastfeeding? Interestingly, the rash slowly went away on it's own as I weaned, so maybe I had "self-healing papular mucinosis."

http://dermnetnz.org/immune/scleromyxoedema.html

Post by **tex** » Thu Jan 13, 2011 11:06 am

For non-sedating antihistamines such as Zyrtec, I believe you have to take them regularly, (IOW, every day), for at least 3 or 4 days, before you will see much of an effect.

I once bought several cheap flannel shirts, (imported, of course). Most of them were OK, but one of them, (and only one of them), caused a bad rash on my right upper arm. It itched like mad. As long as I stayed away from that particular shirt, I was OK, but when I rewashed that shirt and tried it again, almost immediately, the rash reappeared.

I gave it to my brother, (after telling him about the problem), and it didn't seem to bother him.

Unless they're so obvious that no one could miss them, rare diseases are completely off the radar of most docs. When they hear hoofbeats, they expect to see horses, not zebras.

Tex

Zizzle · Post by **Zizzle** » Thu Jan 13, 2011 11:42 am

Oh my, now a link to my ol' mitral valve???

Br J Dermatol. 2001 Mar;144(3):594-6.

Lichen myxoedematosus with associated cardiac abnormalities.
Morris-Jones R, Staughton RC, Walker M, Sheridan DJ, Rajappan K, Leonard J, Hardman C.

Department of Dermatology, St Mary's Hospital, London W2 1NY, U.K.

Abstract
We describe a 42-year-old woman who developed lichen myxoedematosus. Twenty years after the onset of the disease she became breathless and hypertensive, and an echocardiogram showed a mass on the mitral valve, which was thought to be a mucin deposit. Her hypertension was resistant to treatment with combination antihypertensives. To our knowledge, this is the first report to link lichen myxoedematosus with a valvular mucinous mass. This case also demonstrates the slow clinical progression of the disease over 20 years.

Polly · Post by **Polly** » Fri Jan 14, 2011 6:58 am

Hi Z!

Uh oh, there you go reading too many articles! Just kidding. LOL! Seriously, how is the rash doing? Did you elect to try the pred. or the antihistamine? I agree it would be best to "nip it in the bud" if you can find what works, since our immune systems seem to take on a life of their own once they are set in motion.

Love,

Polly

Zizzle · Post by **Zizzle** » Fri Jan 14, 2011 9:40 am

Hi Polly,
I completely stopped reading after the first three articles. Not good for me, I know!

The itching stopped yesterday, perhaps due to the betamethasone cream, but the rash continues to form, on my right more than the left. There are characteristic raised, flat follicles - one patch is pale, the others are forming in pink/purple streaks. Both sides where the rash is forming feel waxy and thick to the touch. This is all too familiar. Is there a saying about a 6 yr itch? I also have some bumpiness developing on my cheeks next to my nose. I can't help but think if I had sun exposure it would turn into a malar rash as it did in Florida. I go back to Florida in late March...

I started Zyrtec this morning, but only half a dose - it makes me feel loopy. I don't tolerate adult doses of most meds. The MC is improving, probably because I'm at the tail end of my menstrual cycle when things firm up. It'll be major D when my period starts! I wonder if there is a connection to the low estrogen at the end of the cycle and the post-partum/lactating low estrogen of 6 years ago?

I'm now wondering what kind of medical professional to consult with and how soon. I'm due for 6 month bloodwork with my PCP next month. But should I start searching for a dermatologist or rheumatologist now? (waiting for a new patient appt could take months with a decent one). My dermatologist of 6 yrs ago was a total waste. When my ANA came back positive, she sent me directly to a rheumy. Are derms at all equipped to deal with real medical issues, or just beauty treatments?

Post by **tex** » Fri Jan 14, 2011 11:01 am

Zizzle,

You might be better off seeing an allergist, since an allergist should be capable of understanding and aggregating all the issues, (internal, as well as external), that you are dealing with.

Tex

Zizzle · Post by **Zizzle** » Fri Jan 14, 2011 12:02 pm

I did see a highly recommended allergist/immunologist the first time I had the rash. When they learned that antihistamines and steroid creams weren't helping, they declared it non-allergic and said they couldn't help me. I wondered why "immunologists" don't deal with issues of the immune system beyond run-of-the-mill allergies?!? So I had to see a rheumatologist, who cared little about my skin rash, and wanted to know more about my joints.

I give up.

Post by **tex** » Fri Jan 14, 2011 1:49 pm

Zizzle wrote:When they learned that antihistamines and steroid creams weren't helping, they declared it non-allergic and said they couldn't help me.

I guess that proves that the field of gastroenterology doesn't have the market cornered on "wannabes" posing as real doctors.

As least they were right about not being able to help you - we have to give them credit for that.

It's a real shame that it's so difficult to find a "specialist" who actually knows enough to be able to handle anything more uncommon than the sniffles or ordinary diaper rash.

Is there actually such a thing as a non-allergic rash? I'm having trouble visualizing that.

Tex

Zizzle · Post by **Zizzle** » Fri Jan 14, 2011 2:46 pm

I forgot to mention I saw a different "highly acclaimed" allergist/immunologist about my LC last year. I wanted food allergy/intolerance testing to see if that explained my human blender GI symptoms -- my GI referred me because she didn't have any thoughts or suggestions beyond Asacol for dealing with MC. So he suggested skin patch testing (all negative, some inconclusive) for "delayed food allergies", and otherwise said I might try elimination diets or/and an allergen-free amino acid liquid diet if the symptoms are bad enough - to confirm food sensitivities are involved. He could not answer any questions about my immune system's involvement in LC. Again, what happened to "Immunology"??

I found Enterolab on my own after that disappointing medical experience. After seeing results on the GF/DF diet, I sent him a letter and told his staff when they followed up with me. All they could do was congratulate me for feeling better.

Honestly, all I want is ONE doctor with half a clue and a willingness to research and learn, who can put all the pieces of this endless puzzle together for me. Is it too much to ask for?!? I'm in the nation's capital and I'm tired of knocking on doors, waiting for appointments and telling my story to total DUDS!

I can't even get my freakin' gene test results back from Dr. Fasano's office that were done in early November! (he ordered them because he refused to look at my Enterolab results)
But I don't even care about getting a celiac dx anymore.

AARGH!!!

Post by **tex** » Fri Jan 14, 2011 4:01 pm

Well, surely you realize that the nation's capital is filled with hot air and unfulfilled promises.

Apparently, some of that air is overflowing, and drifting up the coast into Maryland, if Dr. Fasano is already becoming affected. Of course, they say that the average length of time required to get a celiac diagnosis is still close to 11 years, so maybe he's just letting the clock run, so as not to upset the statistics.

Tex