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Newbie Question - Morphea Symptoms Is this normal?


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#1 grndslm

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Posted 18 November 2010 - 07:03 AM

Hi there! I'm so glad to find this forum and hope you can help.

I am a 54 yr old woman and received my diagnosis of morphea 4 months ago. Here's how it happened...a year ago, I noticed a strange, itchy, "blotch" (4" x 2") on my right hip and other thick skin on my shoulder and chest. Six months later, my general practitioner sent me to a dermatologist. The dermatologist suspected Morphea and did blood work to check for systemic scleroderma as well as a skin biopsy. When the results came back he confirmed that I have localized scleroderma/morphea and NOT systemic scleroderma. He prescribed a topical steroid cream for my blotch, but said it was unlikely to help, that there was nothing else he could do and it should go away in 3-5 years.

I used the cream and it seemed to help with the dry skin and thick skin - I had a follow-up visit with the dermatologist 6 weeks later who suggested I come back every 6 months - although I'm not sure why he wants to see me, since he said there was nothing he could do!

I have had no other symptoms until two weeks ago. It, with lower back pain on the same side of my torso as my "blotch". A few days later, 4 small, but painful bruises appeared on my lower back and I can feel thickening underneath them. The bruises are now going away but now I have red patches on the front and back of my torso that are very itchy and look like hives. These spots are near my older blotch and near the bruises. The lower back pain interfered with my sleep but is now much better. However, the hives are driving me crazy!

These symptoms seem really strange. Why did I get these bruises? I'm a VERY active person, I do yoga, biking and workout a lot at the gym. I'm wondering whether it was something I did that caused some internal damage - I can feel thickening areas under the skin where the bruises were. The itchiness is also really annoying - is this normal for this condition? I'm wondering whether the steroid cream might have caused the hives? I was applying it like mad when the bruises etc. started.

I also have a second question. Is a dermatologist the right kind of physician to treat localized scleroderma/morphea? As I read other's posts, it seems that a lot of people are seeing a rheumatalogist or "scleroderma specialist" but I'm not sure if this makes sense since my condition is NOT systemic.

Initially, after my diagnosis, I wasn't too concerned because the symptoms on my skin had stopped (at least temporarily) being a bother but with my new symptoms - pain, bruises, itchiness, I'm wondering what I can expect and whether I need more aggressive treatment.

Thanks in advance for any help this group can provide.

#2 Shelley Ensz

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Posted 18 November 2010 - 07:31 AM

Hi Grndslm,

Welcome to Sclero Forums! I'm sorry you have morphea, and send you my best wishes. Here is a welcoming hug for you:

:emoticon-hug:

Your questions would probably be best addressed by a scleroderma expert. Since there is a center right in Boston, at the Boston University School of Medicine, that should be easy enough for you. Just call them and ask whether they'd want you seen by rheumatology or dermatology; each center is a little different in how they handle localized versus systemic.

It's possible that you might be in an active phase of the illness right now and that something might be able to be done to quell it. There's always a trade-off as to whether the treatment is worse than the disease, especially with morphea. But I'm sure you'd feel much better to be under expert care now. Certainly, it's good news that you have the localized form, and not systemic, but still and all, morphea can sometimes be a handful to deal with in itself, especially if it doesn't just settle down and fade on it's own, in a timely manner.
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Shelley Ensz
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#3 Amanda Thorpe

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Posted 18 November 2010 - 07:53 AM

Hello Gndslm

Welcome to the forums! Shelley's already given you great information so I just wanted to greet you and say it's nice to meet you!

Take care and keep posting.
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#4 Jeannie McClelland

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Posted 18 November 2010 - 09:12 AM

Hi Grndslam,

I'm also just popping in to say hi and to welcome you to the forum. There are a number of members with morphea so maybe some of them will chime in with their experiences.

I get hives every now and then, completely unrelated to scleroderma, and I wish I could find a magic wand to make them go away when they pop up. :fairy: They sure aren't fun! The itching isn't either, so you have my complete and heartfelt sympathy. I hope things improve soon.

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#5 Amanda Thorpe

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Posted 18 November 2010 - 09:34 AM

Oh...doh! I have systemic scleroderma and morphea and bullous morphea. I'm on methotrexate for the systemic sclerosis which hasn't made much difference to the bullous morphea, I've also got a steroid cream for it but again not it's not made much difference. The morphea has improved but I don't know if it's the methotrexate or if it's in the process of burning itself out. I so hope the bullous morphea does the same thing.

Take care.
Amanda Thorpe
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#6 Joelf

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Posted 18 November 2010 - 11:11 AM

Hi Grndslm

A very warm welcome to these forums.

I'm sorry you've had such a lot of itching and discomfort and agree with the others that you should really contact a Scleroderma expert for your care. Scleroderma is such a complex disease and sadly a lot of rheumatologists don't fully understand it.

I am also a very active person who spends a lot of time exercising and going to the gym and I think it's unlikely that this has caused your condition to worsen, but I have no medical knowledge and so can only advise you from my own experience. I have Systemic Limited Sclero and in my case it was very fortuitous that I was so fit as I noticed the deterioration in my lung capacity very quickly.

Do please keep posting and let us know how you're faring.

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#7 grndslm

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Posted 18 November 2010 - 02:17 PM

Thanks for the warm welcome. It's great to know that this forum exists. I will look into the center at Boston Univ. Medical center. It is very close. Meanwhile, I'm just trying to keep from scratching!

#8 Sweet

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Posted 19 November 2010 - 06:46 AM

Hi Grndslm


Welcome! I'm glad you found us, and we are super happy to have you. I don't have any good answers for your questions, but look forward to hearing what your doctor says about them. It does seem very odd.
Again welcome. :flowers:
Warm and gentle hugs,

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#9 grndslm

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Posted 19 November 2010 - 10:21 AM

Hello all...today the hive-like red spots were worse, so I went to see my Dermatologist. He did two biopsies and is checking for panniculitis (inflamation of fat layer under the skin) and wants to make sure that whatever is happening is related to morphea and not something else. Seems like a reasonable thing to do. BTW - he said that he did not think that the small bruises - one is still there - are a result of my disease. I have NO idea how they occurred. Anyway, it will take a few days to get the results. Not sure what the next step will be. Hope the itchiness will stop soon!

#10 miocean

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Posted 19 November 2010 - 04:42 PM

Itchy skin is very common, again, there are many posts on Itching . My humidifier has gone the way of donation, we found it was putting a white powder on everything, even a floor below it. It did help, though. I can't tell you how many different lotions I tried for it, I am still finding jars and throwing them out as I finally get around to cleaning up/out the place.

I have found that if I search for something on the site it is better to do an Advanced search. I found this one because I knew I posted and searched under "Itchy" and posted by miocean. I don't itch any more, it stopped after a few years. I really did overdo it in a hot tub. This is gross, but my skin was so dry that when I emptied the tub, the bottom would be covered with skin particles, which my husband would have to clean out because I couldn't bend to do it.

When I was first diagnosed, the dermatologist I was going to said "I just don't know what I can do to help you." I told her if she could just stop the itchiness, I'd be happy. She told me to soak in a lukewarm tub for 45 minutes, then moisturize. This led to long, hot baths, as in the post. Once again, good ole me not following the directions.

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