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Morphea/scleroderma relation


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#1 isobelle44

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Posted 28 July 2008 - 12:10 PM

I always wonder how morphea is all related to scleroderma. I know it is called localized scleroderma, I know it is only skin involvement, But I wonder how else they are connected. Though there isnt suppose to be internal organ involvement, I seem to have several other kinda weird things that I have seen others discribe on these sites that have diffused or systemic. Like:


i have had those little prickly heat things on my hands before morphea popped out, I thought I was allergic to the sun cause it happened everytime I went outside. After the morphea appeared I never had that again (so far)

then recently I have had a couple little lumps on my back of hand.

I had to have a medical procedure and they have been having a hard time lately drawing blood and putting in the iv, they blew 2 veins and the expert had to do it.

I have started having problems with my eyes and have developed a syndrom that can lead to glaucoma, I have read about systemic having that.

It seems my feet have lost padding, they hurt like crazy and im always looking for the new gel pad to try.

Dry eyes so far no sjogrens but I have to use artificial tears.

Some sore joints , legs mostly, sometimes wrist

tightness in my neck

seems my hair is thinning

Diahrea, or constapated

acid reflux, though not everyday, just more then I used to. I take antacid tablets and it helps.

Little things like that. Im not saying its totally scleroderma related, it certainly could be other reasons, getting older,im 53, diabetic (type 2), I work hard and have more stress then I want. But not much I can do about that.

I have a scleroderma specialist dermatologist and she has sent me once to the scleroderma specialist rheumatologist that talked to me but didn't do any testing. I have only had this for a year.

I wonder if this is morphea or morphea with scleroderma overlap, I dont have raynauds, yet anyway.

I read alot about all the forms of scleroderma and it seems I can relate to alot of different things. Its a very strange disease.

Any comments would be greatly appreciated.



sorry I forgot to add that I have had that burning, unbearable itchy skin (havent had that for a while now) also slightly puffy fingers. think thats all.



Sharon

#2 Nae

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Posted 28 July 2008 - 02:37 PM

Hello,
morphea and ssc are related because of the "collagen issue", in ssc collagen affects internal organs and vessels, in morphea, it causes a "hard" patch.
More and more often, specialists don't relate the 2 diseases and morphea is more often used to name the disease than "localized scleroderma", some call it a "scleroderma like".
Of course the biggest difference is that morphea (plaque type) is benign, linear is "problematic" when affect mobility, and of course this is inesthetic, with GENERALLY no internal involvement.
For your symptoms, I think only blood tests could give you the "right answer", but if you don't have raynaud and no sclerodactyly (raynaud sometime appears before the disease) it does not seem to be ssc.

I think others members will respond you better, I have morphea (single patch) and don't know very much about systemic symptoms.

Bye and once again, I hope my english will be understandable.

#3 Amanda Thorpe

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Posted 28 July 2008 - 03:00 PM

Isobelle,

I don't know if this will help you but I started out with morphea that after 4 years began developing into scleroderma systemic sclerosis, diffuse. I understand this is rare but according to my rheumatoliogist I am an atypical sufferer.

I had a waxy, itchy patch of skin on my right shin that sat there for 3 years then started to expand. At year 4 it appeared on the other shin and began its descent to the ankles and feet. It appeared on my forarms and hands as then pretty much everywhere by which time it was clearly scleroderma.

Perhaps a biopsy will confirm a diagnosis as blood tests can be inconclusive, I have a negative ANA but have systemic sclerosis nevertheless.

Hope this helps.

Amanda
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#4 isobelle44

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Posted 29 July 2008 - 12:52 AM

Thank you both for your comments, and Nea your english was fine. I have had a biopsy and bloodwork from my first rheumatologist that came out negative. Im curious Amanda, When you were diagnosed morphea, did you have little odd things that just didn't seem to mesh? Looking back at it. I know I dont have raynauds and that is a huge marker. I have another correspondent that has morphea and we email alot, but she doesn't have the stuff I do. When I tell my doctors about some of this stuff they really dont say anything. So I dont know what to think anymore. I always heard you have to be aggressive and catch things early. I would hate to just let time pass if its more then morphea you know what I mean.

#5 Nae

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Posted 29 July 2008 - 06:06 AM

If you haven't Scl70, ANA and others antibodies I think it can't be systemic.
You should go to your specialist and ask for news blood tests, if they're negative, ask your rhumatologist to know what causes your symptoms; there is many thing that cause joints pain (it doesn't get better with age :)), and acid reflux. I think you shouldn't worry since you don't have the main symptoms of SSC (raynaud is present in 90% of systemic patients).

#6 Amanda Thorpe

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Posted 29 July 2008 - 10:02 AM

Isobelle,

I am afraid I won't be much help here because the morphea was intitally misdiagnosed as necrobiosis lipodica, a condition associated with diabetis and always leads to diabetis.

I started out seeing dermatologists as initially the only issue was the weird patches on my shins. The first dermatologist I saw said it was either morphea or necrobiosis. She leaned towards morphea but was swayed by a colleague towards necrobiosis After that I saw other dermatologists who confirmed the misdiagnosis. When I finally went back to see the original dermatologist some months later she confirmed it was not necrobiosis lipodica but morphea.

The other thing to bear in mind is that I had morphea a long time before seeing a doctor. The morphea apeared on one shin in 2003 but I waited until it appeared on the other shin, in 2006, before seeing a dermatologist so would not have been paying close attention to what else was going on in my body. Having said that with hindsight I can confirm that even before 2003 I had pains in my arms, wrists and hands, hip pain and supposed irritable bowel syndrome. It's only now with the scleroderma diagnosis that previous ailments fall into place.

I recommend a biopsy because blood tests can come up negative as in my case. Either way I do hope you get some answers soon.

Take care.

Amanda
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#7 Nae

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Posted 29 July 2008 - 12:46 PM

Hi,

the biopsie can confirm if it is a morphea (in my case the specialist recognize it without biopsie, even if the skin weren't hard, they're used to see it) but only the auto antibodies can confirm the systemic involvement (i think)

#8 isobelle44

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Posted 29 July 2008 - 03:41 PM

I guess it sounds like I need to be tested again for ana or sl70, its been awhile. I see my local rheumatolotist this next month so its good timeing. Thank you both. sharon

#9 kelowna52

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Posted 30 July 2008 - 03:50 AM

Hello Sharon I totally know where your coming from. This all started for me with a biopsie done on my feet that determined I had Morphea. I have all of the same symptoms you do and more. I am 54 years old but I don't have Diabetis. I do have Raynauds. I have bad migraines alot of body pain especially in my neck and shoulders. My skin feels extremly dry and itchy alot. I have all of the same GI problems you do. I did have my Gall Bladder out recently which seems to have helped the acid reflux somewhat. I see quite a few doctors about various problems, so I totally know where your coming from. Good luck to you.

Jackie S.

#10 Amanda Thorpe

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Posted 30 July 2008 - 06:13 AM

This will be my last post on this topic I promise! :). As explained to me by my rheumatologist and then the scleroderma nurse (I have to be told things twice), about 6% of people with SSc have a negative ana and can't be diagnosed using a blood test alone. Apparntley I have an "atypical presentation" of this disease whatever that means. I think it's a polite way of saying I am an oddball.

Take care.

Amanda

P.S. Today I ain't having a good day and I don't want to play anymore. I hope the rest of you are faring much better.
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#11 Donna V

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Posted 31 July 2008 - 11:44 AM

I'm a couple of years older than you and now have or have had almost every symptom you described, and boy did you describe them well! I don't know about the morphea, though; my skin problems have gone on a long time and no one ever labeled them. (Ha ha, guess that's what I get for going to a dermatologist whose primary focus is Botox!) Anyway, I DO have Raynauds and that was the first, most prominent symptom I got. I'm glad you don't have that one!

I read an article through a link in this website about how scleroderma can affect your gastrointestinal tract, with reflux, diarrhea and constipation being just a few of the ways. It's hard to keep it all straight, but reading some of the articles is really helping me understand a lot more, and knowledge is power, right?

Take good care of yourself!
Donna

#12 isobelle44

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Posted 31 July 2008 - 02:49 PM

Thank you all so much for the comments. I have been reading so much and the information on this site is incredible. Donna and Keonoan how did your skin problems start and how long have you had it? Its so hard to find someone who has morphea. Sharon

#13 jefa

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Posted 01 August 2008 - 06:28 AM

I have just been reading all of your very interesting questions and answers. I am not a doctor and everything I know about morphea is from reading here on the site, but I do have a few comments. For one thing, it seems that in terms of diagnosis, biopsy is the definitive way to get the answer. Nae is correct in saying that the SCL -70 antibody is usually indicative of systemic sclerosis, but having it does not mean you will develop it. Also you can have a negative ANA and still have systemic sclerosis (or morphea).

Here is our page on Localized Scleroderma: Morphea and our page on

Auto Antibodies in Scleroderma.


Warm wishes,
Jefa

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#14 Nae

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Posted 01 August 2008 - 11:45 AM

Hello,
I meant that not having SCL-70 is pretty reassuring. I think it can't be systemic without scl70.
And of course, you can developp morphea with or without ANA, I have a morphea and none auto antibodies. The quantity of ANA antibodies is, for the doctors, a good indication for the "future". Having a lot of ANA tends to suggest that the lesions will grow or new lesions can appear. More ANA => More risk.
I don't have ANA and have only a single little patch. So, if you have a morphea and you are negative for ANA, the pronosis is really good . The treatment is function of the ANA number.
I have read some articles about morphea (many in fact :P) and having a morphea then develop systemic is extremely rare, the only reported cases seems to be "unfortunate coincidences". And morphea is not a symptom of the SSC.

#15 Donna V

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Posted 02 August 2008 - 05:30 AM

Sharon,

I've always had "different" skin (reacting severely to sun, wind, cold, hair remover and even preparations designed to soothe those reactions) but about 2-1/2 years ago, after I had a segment of colon removed, my skin developed a patchy, itchy but sensitive reaction over my entire body with the exception of my pelvis and anterior trunk. It developed into what look like scars and/or burn scars all over, with bigger patches on the fronts of my shins and mottling on both sides of my face. My Raynaud's has always been there but was never unbearable until a couple years ago. Last winter was really bad; the skin deterioration I had developed before winter started to develop ulcers. Ouch.

Donna