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Biomarker for Diffuse Scleroderma skin has been discovered!


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Morphea here and there.


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#1 MonicaPA

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Posted 07 September 2011 - 01:49 PM

Hi,

I have morphea and I have been seeing a dermatologist since 2006. I have many, many patches of hyperpigmented skin. Now, I have a burnout morphea bruise on my leg and it has been itching for a month, so I think that patch is reactivating like it wants to spread more.

I think I could try the creams, but I always think about the methotrexate option, if this is something I should consider, but I always hear this is so toxic. However, I also hear that this is the standard treatment for rheumatoid arthritis or really bad psoriasis. So maybe if the doctor decides to put me on it, I shouldn't be so afraid of it, since a lot of people take those medications.

Monica

#2 Joelf

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Posted 07 September 2011 - 02:58 PM

Hi Monica,

Welcome to these forums; we've already said 'hello' in the chatroom!

Sorry to hear that you're suffering with Morphea. Thankfully I don't have this myself but I've included a link giving you some information about the use of Methotrexate in the treatment of morphea, which I hope will be of interest to you. I know many of our members are taking methotrexate and have found it to be quite successful; obviously the same drug can have different effects on different people but I'm sure some of them will be along to give you some first hand information.

I'm pleased that you've found our forums and joined our community and look forward to reading your posts and hopefully meeting you again in the chatroom.

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Jo Frowde
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#3 MonicaPA

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Posted 07 September 2011 - 05:34 PM

Hi thanks for you reply!
I'm going to look up that information!

#4 Sweet

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Posted 07 September 2011 - 05:41 PM

Hi Monica!

I just wanted to pop in and welcome you with a big hug to our sclero forums. I look forward to getting to know you. :emoticons-group-hug:
Warm and gentle hugs,

Pamela
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#5 Snowbird

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Posted 07 September 2011 - 07:05 PM

Hi Monica

I just wanted to welcome you too!
Sending good wishes your way!

#6 Shelley Ensz

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Posted 08 September 2011 - 08:28 AM

Hi Monica,

Welcome to Sclero Forums!

You'll need to discuss your treatment options with your scleroderma expert, of course. There are a lot of things to weight regarding treatment decisions, especially whether the side effects are going to be worse than the disease. Sometimes the answer is very clear and other times it is rather hazy. It would likely be an immediate "yes" if you were a child with a morphea patch right over a joint, as it can sometimes burrow down and prevent the growth of a limb.

Definitely see the doctor about it since the lesion sounds like it is becoming active again. It's far better to treat morphea "ahead of time" than it is to try to clear up any damage after it has already occurred.

Here are some warm, welcoming hugs for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 debonair susie

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Posted 08 September 2011 - 08:43 AM

Hi Monica,

I also would like to give you a Warm Welcome to our awesome Sclero Forum. We hope you post often so we are able to get to know you much better and hopefully, give you the support you so very much deserve!

It shouldn't be long before you are able to determine a treatment choice, or at the very least glean information from the links Jo provided you and share with your doctor.

In the meantime, I'm sending over :emoticon-hug: s, because that's what we do here and we all seem to love hugs :emoticons-group-hug:
Special Hugs,

Susie Kraft
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#8 Amanda Thorpe

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Posted 08 September 2011 - 04:10 PM

Hello Monica

Welcome to the forums! I am sorry you have morphea, boy don't it itch? I have used a steroid cream for itching in the past. I have also been on methotrexate but that was for the systemic form of the disease and I can't say my morphea improved nor the bullous (blistering) morphea I have. However I do know it is often prescribed for children with morphea because of the complications Shelley mentioned.

Needless to say you need to speak to your doctor before you make a decision either way. Please let us know how you get on.

Take care and keep posting.
Amanda Thorpe
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#9 MonicaPA

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Posted 08 September 2011 - 06:49 PM

Hi guys thanks for the welcome.

I had a patch of hyperpigmented skin on my left shoulder since I was 8. Some people would say, "Oh you have a birth mark."

It never did anything until I was 35. It was mid 2006 and I had a flare. I didn't know what it was. It took very few months to spread. Well I ended up with it on my torso front and back, two bruises on my legs, faint ones on my inner arms can barely see.

Funny it is all somewhat symmetric.

I have it on the left side of my body, and I have it mirroring on the right. Now it is all burnt out, a brownish color. It doesn't itch and the skin is not thick. It is just this weird color, like a bruise.

The dermatologist who saw me had many morphea patients, said that this is rare. He said mine was common (I think he meant a more common type amongst the morphea types). I went there every 6 months or so. Now I'm 40. I need to go back because one of my patches has been itching for weeks, and the margins are red, so I think it wants to spread.

I was counting on that theory that it self -esolves in five years, but I guess it may not be my case. I remember the doctor saying if it started to spread again he was going to consider methotrexate (MTX). I know the MTX is meant to put this in remission and not to reverse it. I wish they used more light therapy but I'm not sure if it is as efficient as MTX.

#10 aniaksdh

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Posted 28 October 2011 - 02:17 PM

I have morphea, presently seems associated with hits by baseballs or softballs (I pitch), between knees and ankles. There is only one spot, about 3/4 inch round, truly fits the description, now fading after about 4 years, but a few (3 distinct) more hardening tissue lumps with skin slowly getting shiny with deeper color. Nothing seems hereditary, although my sister and her husband and grown child have immune issues - psoriasis and asthma - that make me wonder if I am simply asymptomatic, except for the morphea? There is SO much information out there, but I haven't found much that promotes natural treatments.

#11 Shelley Ensz

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Posted 28 October 2011 - 06:49 PM

Hi Aniaksdh,

Welcome to Sclero Forums! I'm sorry you have morphea. Are you being treated for it by a scleroderma expert yet? It seems like it is easier to prevent the spread of morphea than to clear it up after it is well established. There are many sites that might promote a natural treatment on the internet, because it is good for sales but not because it would work. So the best approach is to consult a scleroderma expert and rely on their advice.

Also you can peruse our section on Morphea Treatments, too, where you'll see that as an alternative therapy, they think that high-dose zinc gluconate might work (about half the time), although placebo-controlled studies still need to be done. Of course, you would attempt that only under the supervision of your doctor because even so-called natural treatments can have adverse side effects.

But meanwhile, just plain "welcome" to the forums, we are very glad to have you here!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Joelf

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Posted 29 October 2011 - 12:11 AM

Hi Aniaksdh,

Welcome to these forums!

I'm sorry to hear that you have Morphea. I would certainly echo Shelley's advice that you consult a Scleroderma expert if possible, as sadly mainly doctors and rheumatologists do not have the expertise to deal with such a complex disease.

I've included another link about Morphea which I hope you'll find helpful and informative.

Do keep posting and let us know how you are faring.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#13 Amanda Thorpe

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Posted 29 October 2011 - 07:02 AM

Hello Aniaksdh

Welcome to the forums! may I also echo Shelley's advice to see a scleroderma expert as well as to think twice about buying any supposed remedies from the internet.

I have both the systemic form of scleroderma and morphea including bullous morphea, the blistering form of the disease, although this has finally gone! I never had any morphea specific treatments though, I have been on either methotrexate or mycophenolate, for the systemic scleroderma, since 2007 and I can't say it's made any difference to the morphea itself. I was told by the rheumatologist to see a dermatologist if the immunosuppressants didn't do anything for the morphea but never bothered, too many doctors to see already!

Take care.
Amanda Thorpe
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