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Localized scleroderma.


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#1 Joelf

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Posted 14 July 2012 - 12:10 AM

Localized scleroderma.

So far, the most robust data is available for ultraviolet A1 phototherapy in disease that is restricted to the skin, and methotrexate alone or in combination with systemic corticosteroids in more severe disease that additionally affects extracutaneous structures. Dermatol Ther. 2012 Mar;25(2):135-47. (Also see: Morphea Treatments)

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

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#2 kselibrary76

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Posted 17 July 2012 - 12:52 PM

Localized scleroderma.

So far, the most robust data is available for ultraviolet A1 phototherapy in disease that is restricted to the skin, and methotrexate alone or in combination with systemic corticosteroids in more severe disease that additionally affects extracutaneous structures. Dermatol Ther. 2012 Mar;25(2):135-47. (Also see: Morphea Treatments)

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

Thank you for the article.

#3 Amanda Thorpe

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Posted 18 July 2012 - 03:14 AM

Hello Kselibrary76

Welcome to the forums and thank you for taking the time to comment on the news article. Have you localised scleroderma yourself?

Take care.
Amanda Thorpe
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#4 Joelf

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Posted 18 July 2012 - 05:24 AM

Hi Kselibrary76,

Welcome to these forums and I'm pleased that you found the article interesting. :)

Now that you've found us do keep posting!

Kind regards,

Jo Frowde
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#5 kselibrary76

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Posted 18 July 2012 - 07:37 AM

I was diagnosed (via biopsy) with Morphea about 5 years ago.

We went on vacation to Providenciales and I came home with 21 white plaques about the size of a quarter.

I was sent to a rheumatologist who sent me to an immunodermatologist.

We decided to go with kenalog injections into each lesion. This took 5 trips, and the lesions began to burn out.

One then showed up on my breast. This one burned out on its own within 2 years.

I have heard that it is quite rare to have localized sclero and systemic. Is this so?

The reason I ask is this...I recently went in to see my general practitioner because I was having bone pain and muscle fatigue. He did a big series of bloodwork that showed my Vit D was very low (could be the bone pain) and that my ANA was 1:640 Centra (whatever) pattern which suggests CREST/Sclero.

My question is ... could my morphea give that pattern as well?

I go for an ultrasound of all my innerds (lol, always loved that word) tomorrow. I have an EGD on Wednesday next.

I'm scared. VERY. I had been told it was super rare to have morphea AND systemic Sclero.

*I also have vulvar and anal lichen sclerosis...any thoughts you have would be GREATLY appreciated.

#6 Joelf

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Posted 18 July 2012 - 02:09 PM

Hi Kselibrary76,

I believe that it is rare (but not impossible!) to have Morphea and Systemic Scleroderma and if I'm not mistaken I think Amanda has both. :emoticon-dont-know: I can also recall that we have at least one member who has Lichen Sclerosis and hopefully she may see your post and might be able to give you some more first hand information.

Just a little thought about your blood tests; although they can suggest Scleroderma the results are by no means conclusive as some of our members have had negative blood tests and have most definitely been diagnosed with Scleroderma and yet others have positive antibodies and have never developed the full blown disease. I myself have the positive antibody Anti-PM/Scl and yet thankfully have not developed polymyositis (yet!! ;))

I'm very sorry to hear that you're experiencing such worrying problems and I can understand that you must be feeling very worried and scared. Are you being treated by a Scleroderma specialist? We do recommend that our members, if possible, consult an expert, as sadly many rheumatologists do not have the knowledge or expertise to deal with this complex and unusual disease.

Do please let us know the results of your ultra scan tomorrow and your EDG next Wednesday.

Kind regards,

Jo Frowde
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#7 Amanda Thorpe

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Posted 18 July 2012 - 02:55 PM

Hello Kselibrary76,

I have diffuse systemic scleroderma, morphea and bullous morphea, which is the blistering form of morphea, and if the blisters burst they can ulcerate and that's what has happened to my right shin so I now have ulcers on leg to accompany those on my feet and the stasis eczema.

The morphea is mainly on my thighs, I have about 11 massive plaques on them and I also have plaques on my calves which are developing nicely thank you.

As for the systemic scleroderma, that's another story although I would echo Jo's point that blood work can be misleading for example, my ANA & SCL-70 is negative and my rheumatoid factor is normal. In other words my blood tests say healthy but my body says something very, very different. Again echoing Jo, if you are being diagnosed with a systemic form of scleroderma you need to be under the care of a scleroderma expert.

The road you're on can be quite bumpy and uncertain but we are here for you and will try ans answer your questions as best we can.

Take care.
Amanda Thorpe
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#8 kselibrary76

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Posted 19 July 2012 - 08:24 AM

Hi Kselibrary76,

I believe that it is rare (but not impossible!) to have Morphea and Systemic Scleroderma and if I'm not mistaken I think Amanda has both. :emoticon-dont-know: I can also recall that we have at least one member who has Lichen Sclerosis and hopefully she may see your post and might be able to give you some more first hand information.

Just a little thought about your blood tests; although they can suggest Scleroderma the results are by no means conclusive as some of our members have had negative blood tests and have most definitely been diagnosed with Scleroderma and yet others have positive antibodies and have never developed the full blown disease. I myself have the positive antibody Anti-PM/Scl and yet thankfully have not developed polymyositis (yet!! ;))

I'm very sorry to hear that you're experiencing such worrying problems and I can understand that you must be feeling very worried and scared. Are you being treated by a Scleroderma specialist? We do recommend that our members, if possible, consult an expert, as sadly many rheumatologists do not have the knowledge or expertise to deal with this complex and unusual disease.

Do please let us know the results of your ultra scan tomorrow and your EDG next Wednesday.

Kind regards,


The only other symptoms I'm FEELING is muscle fatigue and bone ache, but I was very VitD low. It has improved greatly as I have begun taking VitD.

We'll have to see what my scans show.

As for the specialist I am going to see the rheumatologist my general practitioner suggested (not until August 10). I just found, however, that the city of Chicago has specialists there and am thinking I may go ahead and make an appointment there as it takes a very long time to get into them, I am sure. I'll be calling today.

#9 kselibrary76

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Posted 19 July 2012 - 08:28 AM

Hello Kselibrary76,

I have diffuse systemic scleroderma, morphea and bullous morphea, which is the blistering form of morphea, and if the blisters burst they can ulcerate and that's what has happened to my right shin so I now have ulcers on leg to accompany those on my feet and the stasis eczema.

The morphea is mainly on my thighs, I have about 11 massive plaques on them and I also have plaques on my calves which are developing nicely thank you.

As for the systemic scleroderma, that's another story although I would echo Jo's point that blood work can be misleading for example, my ANA & SCL-70 is negative and my rheumatoid factor is normal. In other words my blood tests say healthy but my body says something very, very different. Again echoing Jo, if you are being diagnosed with a systemic form of scleroderma you need to be under the care of a scleroderma expert.

The road you're on can be quite bumpy and uncertain but we are here for you and will try ans answer your questions as best we can.

Take care.

So, Amanda...how did they come to your diagnosis and do you know if your morphea can skew the bloodwork to show the centromere pattern? I'm so lost and so new. :(

Did you have other symptoms?

What were they if you did?

I'm dreading all of this greatly. Other than fatigue and muscle/bone ache...I feel pretty good!

#10 Amanda Thorpe

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Posted 19 July 2012 - 11:12 AM

Hello Kselibrary76,

I have no idea about the blood work other than the typical markers for systemic sclerosis, being positive ANA & SCL-70, are negative in my case. I am just one of those people who prove that blood work can be misleading and should not have too much emphasis put on it. Have a look at our diagnosis of scleroderma video which explains that diagnosis is best made upon physical examination, clinical symptoms, history, any test results etc. Blood work can help to diagnose and further categorise the type of scleroderma but should not be used alone to diagnose or rule out scleroderma which is why I have no interest in it.

I have atypical diffuse cutaneous systemic sclerosis, upon diagnosis (August 2007) I had about 60 to 70% skin involvement. In February 2007 I lost mobility in my ankles and by August 2007 I was unable to work, in pain and needing a wheelchair. The rheumatologist who diagnosed me knew what it was as soon as I walked in the door and a skin biopsy confirmed the diagnosis. At that time mobility was my biggest issue because I had tight, thick skin just about everywhere which restricted my movement. I also had fatigue sleeping up to 19 hours a day and pain when I stood and walked. I was given ill health retirement in October 2008 age 40.

I managed to go nearly 3 years with nothing internal other than mild gastrointestinal involvement that made me go from a size 14 to an 8 back to a 14, chronic constipation and mild reflux. I was wrongly told my a specialist that because my ANA SCL-70 was negative I would not develop internal organ involvement I.e. heart, lung, kidney involvement. What a crock that turned out to be when in 2010, after yearly ECHO, I was found to be in serious heart failure from myocardial fibrosis. The scleroderma had hardened part of the heart muscle itself and at that point I had approx 2 years if treatment didn't work. Treatment being implantation of a biventricular ICD and it worked wonders I am pleased to say.

Now I have sclerodactyly, it's my fair hands in the video, impaired mobility, killer fatigue as in can sleep 21 out of 24 hours, chronic, severe pain which requires a wheelchair if I go out of the house. All of my pain is in my feet and calves, whereas most sclerodermians seem to get joint pain, and is so bad as to prevent me from being able to stand and walk for long. I also have morphea, bullous morphea, foot and leg ulcers which are painful and persistent as in over a year and still here!

For me I am worse at year 5 than I was at year 2. It's just a case of wait and see what happens next and learn to live within the parameters enforced upon me by this disease. I do what I can when I can and that's that really. It's a very different life from what I thought it would be but it's not all bad, because of scleroderma I have met the most amazing people and will continue to do so I'm sure.

Remember that we are all different, described by one member as snowflakes, so your journey won't look anything like mine.

Take care and keep posting.
Amanda Thorpe
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