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Can Anyone Answer?

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#1 28yearoldmale



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Posted 01 October 2007 - 04:45 PM

Hi everyone. I've recently went to a dermatologist to have her address shiny, hard, and discolored patches on my left forearm and bicep and after biopsy, was diagnosed with linear scleroderma. I also have strange fits of muscle spasm/uncontrolled clenching and burning; but those come and go.

On her direction, I took a blood test today and made an appointment with another dermatologist next week to begin phototherapy. I've also been prescribed two creams. One called Dovonex, to be applied in the morning, and another; Fluocinonide, for before bed.

My question is: What are the chances that this will go away? Is it 50/50 for it going away versus disabling me? From what I have read thus far, it appears that chances are pretty good that it won't turn into the systemic type, since I don’t have any of the other symptoms, but what are the chances that it will render my arm useless or spread to more of my body? I read some cases where it disappears and becomes a bad memory and others where it devastates people but I cannot find any numbers or even estimates. The doctor just shrugged.

I'm a 28 year old male and have never had a serious health issue before. During high school and college I had a few dirty jobs that involved noxious chemicals but I don't think they're to blame because they wouldn't have only hit my left arm. Beyond that, I can't think of any other risk factors. I could post a pic of it somewhere here but don't think it's necessary. It just looks like a scar and I'll probably just tell people it's a burn since that sounds easier than explaining all this to them.

I have one other big question. If I am one of the lucky ones and one or more of the treatments do cause the skin issue to go away, will the muscles stop with the clenching up/burning fits? I know that the skin will always be scarred and discolored and don't care about that since it's just my arm but I am wondering if the muscles can heal as well or if I'm stuck with that part for life. I’m also curious if oral treatments are needed to remove the disease from my wrist/forearm muscles or if the creams and phototherapy knock it out of the skin- will they solve the muscle issue as well.

Sorry this is such a long post. I have a lot of questions. I’d greatly appreciate any info or advice you have. I think I’m doing all I can and it sounds like the dermatologist I’m seeing next week might have a better grasp on this but I want to make sure I’m doing all I can to have the best chance of sending this into remission.

#2 Shelley Ensz

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Posted 01 October 2007 - 06:29 PM

Welcome to Sclero Forums, but I'm sorry it's because you have linear scleroderma. The odds are not very good that it will just go away. It can cause severe disability when it affects underlying muscles.

Fortunately, there are some treatments for linear scleroderma now but they are best at preventing or slowing down progression rather than clearing up any damage that has already occurred.

Since time is precious in this regard, I would strongly suggest that you consult a scleroderma expert as soon as you can arrange it. Call your nearest center(s) to make sure they have a lot of experience with linear; not all of them do, because it is so rare. See our Scleroderma Expert page

Also, read more on our Linear Scleroderma page.

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#3 28yearoldmale



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Posted 02 October 2007 - 05:45 AM


Thanks for the info. From the link you gave me, it looks like the nearest expert is in Houston and there are none in Austin, where I am. I'll see what the one I'm visiting next week says but may end up making a trip in need be.

I thought that there was a chance that this sort of thing would leave after two or three years. Is that not correct? I'm also curious how you would go about getting it out of the muscles. If the creams and phototherapy only work on skin then are pills needed to rid the muscles of it or does the muscle infection leave with the skin one?

#4 Jordan's Mommy

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Posted 02 October 2007 - 10:03 AM


My 7 year old was diagnosed 2 years ago with linear morphea/scleroderma in her left arm (starting at her shoulder and going down the arm and into her pointer finger). It started as a small discolored patch, but then traveled OVERNIGHT to the rest of the arm. She regularly sees a dermatologist, rheumatologist, and opthamologist. Her skin is discolored, and her arm has thinned noticeably from the fat and muscle loss. She has full mobility, though, and her skin is still soft. Her dermatologist believes that the disease will "burn itself out", or be "self-limiting" (generally occurring about 3-5 years after onset). Her rheumatologist says it's possible, but she is rather non-committal as they really just can't tell how the illness will progress. Assuming you have been given an accurate diagnosis, the chances of it becoming systemic are extremely rare.

My daughter was on Dovonex also to keep her skin soft, as well as a topical steroid cream. She has been on naproxen and briefly on prednisone to decrease inflammation. The only medication she currently takes is Plaquenil, which is a disease modifying drug. Her illness has not spread in the two years, which we are thankful for. She may begin phototherapy when she is older, but there are some sclero experts that don't believe in its effectiveness.

Good luck,


#5 jefa


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Posted 02 October 2007 - 09:31 PM

Hi, 28yearoldmale. Looks like you have already been given some good advice, but I just wanted to take this opportunity to welcome you to the Forums. I am sure you will find the other members very helpful and the medical information available on the site is extremely valuable. You've probably already found it, but just in case, here is a link to our page on Linear Scleroderma.

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#6 susie54


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Posted 03 October 2007 - 01:37 AM


I don't have linear scleroderma but I do have muscle spasms, at times alot,. You should be able to get relief from those with a muscle relaxer. I take Tizanidine at night. My neurologist prescribed it. Also, heat around your legs help relieve that burning sensation. Hope you can get some answers. Susie54

#7 28yearoldmale



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Posted 03 October 2007 - 05:58 PM

Thanks for all the replies. I'm going to continue to hope that it will "burn out" sooner rather than later. My arms are the same size and the creams do seem to be softening the skin. I guess it's just luck of the draw whether it goes or gets worse. From the pictures I've looked at, it seems to leave more visible damage on children than adults and I'm guessing it's because it's prevents the limb from growing with the other more so than it shrinks it. I think the fact that I was full grown when it hit me is what's responsible for that.

The really irritating part is that there is nothing I can do (besides drugs and treatments) to influence it either way. Sun, diet, alcohol, and everything else you would think are important are said to make no difference.

Thanks again and good luck with each of your cases.