BeenThereDT

Can Anyone Please Help Me?

7 posts in this topic

Hi and I TRULY appreciate ANY insight here!!! At first (summer 2003) JUST my right thumb would peel from the inside horizontal crease at the knuckle, ALL the way to under the nail bed (dead skin had to be taken off with tiny tweezers). It would peel and heal over and over. Over time, it went to a THICK, deep layer of skin dying off and peeling, and the peeling layers are lighter again, but NOW it's my entire right hand, ends of fingers, JUST on the inside and some of my left hand. My (mostly thigh) muscles HURT and have for years, and I am extremely fatigued. ..so much so that I can't stay awake and active long enough to do my former job. OTHER useful facts....My father died of kidney failure (unknown cause) at the age of 54, and my sister was treated for MCTD after suffering kidney damage and neurological damage (SHE is in complete remission after a year on steroids). I have a positive ANA of 1:320 speckled pattern (still not sure what this all means). THE ENTIRE team of UCDavis dermatologist doctors saw me in Grand Rounds and put me on Kenalog 80mg injection every three months. It's only slowed it SOME... This is still happening and I wonder STILL Has Scleroderma OR MCTD EVER started with the slow progressing peeling and then shining/hardening of only the fingers? I am desperate for answers.

 

I TRULY and deeply appreciate ANY wisdom and insight you may have to offer. TWO rheumatologists were baffled and not helpful so far, and we wait months to see them. I wonder if this skin thing COULD be MCTD related, and what tests I should ask for to rule out MCTD and maybe muscle damage.

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Hi,

 

Welcome. I hope you find some answers. It is frustrating being in limbo. I have scleroderma and suffer from hands that peel their entire layer of skin. I thought it was related to work and the soap I had to use there, but it happens even when I am not working... so that is one thing that is in common with scleroderma.

 

Good Luck in your quest,

Denelle in MN B)

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Welcome aboard~

 

I am sure you'll find some answer's here on the forum. This is a wonderful group of very insightful and caring people.

 

I haven't had the peeling problems that you've had, but I do get A LOT of dry skin build up around my fingertips and finger nails. I get a lot of cracks on my fingers as well.

 

Good luck to you,


Take care and stay warm,

 

Michelle

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Hi BeenThereDT,

 

Welcome to the Sclero Forums. I'm so glad you've joined us. Sounds like you doctors have their hands full trying to come up with a diagnosis for you. I don't have any brilliant insight, but I would encourage you to hound your doctors and continue to work with them until they can come up with something. Are you on any meds?


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi .. I was interested in the fact that your skin peeled.

 

I haven't been diagnosed with anything but I first had an incident five years go when my fingers swelled and feet were sore and then the skin peeled on both areas. I also had lots of tingling and weird feelings.

 

I forgot about it all until recently when it started up again ... no peeling but the arrival of raynaud's on feet and then hands. Lots of tingling and mild pain. I'm nearly 40 so a little old for primary raynaud's (but still hoping).

 

I'm all negative for blood tests and no major pain so it's a waiting game for me. Never heard of anyone else with peeling skin.

 

Take care

Smanda

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My entire body peeled from scalp to bottom of feet three times withing the last two months. They say allergic reaction to Levaquin. This also included a severe itch.

 

My doctor feels now, that this is a Sclero issue rather than allergic as it keeps happening. Last two days itching began again. Every time it occurs, it's back on Prednisone and Hydroxyzine and I can't continually take the Prednisone. I'm going to do the wait and see procedure, take the Hydroxyzine and see if it passes.

 

I'm beginning to tend to side with the general practitioner in that my overall body skin gets a tautness and tightening feeling to it just prior to peeling.

 

As I've said here on several occasions, I recall vaughly and through my mother's recollections, that many, many years ago my father had peeled from head to toe and had doctors totally baffled. It eventually went away on it's own.


Tru

 

It is what it is...........

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Welcome BTDT,

I'm sorry to read about the problems you are having. I've never had any peeling problems like you describe so I did a little research and found a couple of articles you might find interesting. The first one is from the Mayo Clinic. Just click on the links to reach the article.

 

Peeling Skin on hands. What causes it?

 

Peeling Skin Syndrome. WebMD.

 

I'm certainly no doctor but with a positive ANA and your family history I think you need to keep working with your doctors (particularly your rheumatologist) until you get some answers. Please keep us informed.

 

Again, welcome to the ISN forums.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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