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Does anyone have CREST along with Morphea?


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#1 Snowbird

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Posted 16 July 2011 - 08:08 AM

Does anyone here with CREST also have morphea patches? I know there are no definitive answers but am wondering if they do, how many patches you may have developed, where, etc... Also, believe that would make it generalized in that case, right?

Seems there are a few different types of morphea as well so I'm thinking that localized is only if you are not systemic?

Thoughts?

Thanks all!
Sending good wishes your way!

#2 Joelf

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Posted 16 July 2011 - 09:09 AM

Hi Snowbird,

I have limited Systemic Sclero and thankfully not Morphea which is a form of localised Scleroderma. However, when I was at The Royal Brompton Hospital having Cyclophosphamide treatment for my lung fibrosis there was a patient also having the same treatment and who had Morphea as well, so it must be possible. I remember that particularly as he was the first person I had met at that stage who also had Scleroderma like me! ;)

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#3 Amanda Thorpe

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Posted 16 July 2011 - 05:53 PM

Hello Snowbird

Yes it's possible to have the systemic form of the disease and the localised form. I have diffuse (systemic) and morphea (localised) as well as bullous morphea (localised) which is the blistering form of the disease. You must just be greedy like me if you have both!

My morphea patches are on my upper arms and the bullous morphea is on my right shin.

Take care.
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#4 CraigR

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Posted 17 July 2011 - 12:10 AM

This morphea issue might be a source of confusion. The literature says morphea is a localized, non-systemic condition. However, many doctors and patients use the term morphea for skin hardening associated with systemic scleroderma.

Craig

#5 marsha

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Posted 17 July 2011 - 09:22 AM

OK I have a dumb question what exactly is this morphea? Do they come and go? I ask because last winter I developed a inch and a half dry patch but it was weird looking like yellowish in color towards the center on my calf.. It didn't hurt or itch I kept it mosturized and it eventually went away.. it took a couple of weeks. I guess I'm so new to this disease that I'm not sure what I should and shouldn't be concerned with. :emoticon-hug:

#6 Jeannie McClelland

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Posted 17 July 2011 - 10:19 AM

Hi Marsha,

Here's a link that will take you to photos of morphea.
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#7 marsha

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Posted 17 July 2011 - 11:50 AM

Thank you, Jeannie.

The first picture is exactly what the thing on my leg looked like. Okay, so now next question, what does it mean, and should I be concerned?

#8 debonair susie

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Posted 17 July 2011 - 01:10 PM

Hi Snowbird,

As I am not a doctor and not even trained to be a Candy Striper (if they are even part of the "Help Team" in hospitals anymore :P ), I will not try to profess any knowledge in this particular area: Morphea,as I have no firsthand experience with it.

However, as I've read your posts, I've wondered if you have seen a dermatologist? If not, I believe it would be a great idea, as that particular specialist would likely be able to answer your questions, as well as advise you further, with regard to Morphea.

Yet, it IS helpful to get feedback from others here (absolutely), who have Morphea experience, for sure :emoticons-yes:

I will be following your posts on this topic.
Special Hugs,

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#9 Snowbird

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Posted 17 July 2011 - 06:43 PM

Hi everybody

Well Amanda...looks like I might possibly be getting a little greedy too but I'm pretty sure nobody will want us to share this with them anyway, don't you agree :P

Yes, Susie, I seem to have managed to get a patch on my face/jaw line (kinda like a couple of oval but jagged patches that seem to like link together like a chain. It was confirmed as morphea by my scleroderma specialist. Given that she confirmed what it is, I'm not sure that I need a dermatologist; mostly because she didn't recommend or suggest sending me to one. To be honest, that thought never even occurred to me either (thank you for the suggestion!).

Mine reminds me of the burnt out picture somewhat...it's whitish in the middle with darker brown areas around it. I don't remember seeing any other pink or purple colours in it but boy did it itch for months and months...it's a wonder my face is still there, it itched so badly I'm sure I scratched it away if it was there. Got the impression from my doctor that it would have looked different had she seen it in its earlier stages as well (hence pinkish I think). Thanks for the link Jeannie...great information in there.

Thanks everybody, appreciate your help and knowledge for sure!
Sending good wishes your way!

#10 Shelley Ensz

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Posted 18 July 2011 - 12:36 PM

Hi Marsha,

That's a good question about morphea. As it happens, morphea doesn't come and go. It's more of a permanent thing. It may expand, develop other spots, or begin fading after two to five years or so, but it does not come and go within a few weeks or months.

People who take certain medications should be aware that some medications, such as minocycline and plaquenil, can cause spots of permanent skin discoloration which can look very much like morphea -- or like permanent black and blue marks.
Warm Hugs,

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#11 Lynnie

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Posted 18 July 2011 - 01:39 PM

Hi There

Following this thread has answered a couple of my questions too!

I have a few patches of blueish/red irregular patches of discolouration on both my shins. I too get itching bouts and I was wondering if I had a morphea overlap also.

I was on plaquenil (horrendous drug reaction all over my body)after a month and mepacrine for 7 months and had to stop due to a toxicity.

I have CREST/limited scleroderma and it affects our lower extremities and our faces so it is a possibility you are having sclero changes like me.

It always is best to tell your doctor when you see him to clarify things, I'll be asking my dermatologist in August what he thinks about them, and perhaps get some ideas what they are.

Keep well and hugs
Lynn

#12 Snowbird

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Posted 18 July 2011 - 04:14 PM

Believe me, they do itch and itch and itch some more!!!
Sending good wishes your way!

#13 marsha

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Posted 18 July 2011 - 04:39 PM

Okay now I have another question.

Should I have a dermatologist also? Right now I have my physician, the rheumatologist, the Sclero specialist and a vascular specialist that has been dealing with my Raynaud's. I just wonder what a dermatologist can add to the fire?
:emoticon-dont-know:

#14 kris52770

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Posted 18 July 2011 - 04:53 PM

Hi Snowbird,

Finally something I can pipe in about living in sclero limbo. But what they are sure of is that I do have morphea/linear sclero confirmed by skin biopsy. It started on my upper back and boy did it itch for months. In my case I noticed and the regular doctors kept blowing it off. When I started noticing skin changes on my neck and face I went to a dermatologist myself. This guy was great, took one look and took a biopsy. I can tell you that it has not gone away and it spreading slowly. I do believe that it is affecting the muscles.

Morphea, at least to me, feels like the skin being eaten from the inside and your skin randomly hurts throughout the day. You start to see depressed areas. In a way I have been fortunate that I can still easily cover them with make-up and hopefully that is the way it will stay. There is definite muscle weakness and I am using physical therapy to work on that till I get in with the sclero specialists.

Hope that helps a little.

All the best,

Christine

#15 Shelley Ensz

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Posted 19 July 2011 - 08:13 AM

Hi Marsha,

I think you may have missed my previous post, or perhaps misunderstood it.

As it happens, morphea does not just come and go within a few months. If the spot is now gone, there is simply nothing to be concerned about at this time and it would not have been morphea.

If you develop a new spot of any sort, you'd probably first want to see your family physician about it. Most things can be handled by them. If they need to refer you to a dermatologist, they will. It is exceptionally rare for people with systemic scleroderma to also develop morphea (and vice versa) so it is really not even near the top of the possibility list when someone with systemic develops a skin problem of some sort. And like I said earlier, morphea is a permanent condition, not one which can come and go within a few days, weeks, or months.

My thinking is you already have plenty of doctors to see, and plenty of things to handle, plus its pretty impossible to go see a doctor about something that has already cleared up and therefore could not, need not, be diagnosed or treated. Therefore, you get to actually do the Sclero Happy Dance for a very pleasant change of pace! Here I'll start and you can jump in:

:emoticons-line-dance:
Warm Hugs,

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#16 oneuncoolmom

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Posted 21 July 2011 - 01:29 PM

Hi Shelley and Everyone,

I know, Shelley, that you are a scleroderma encyclopedia, but if I understand your last post correctly, I believe you said that morphea is a permanent condition. I have read that it can go away after a couple of years.

I am one of those very rare birds that had morphea and also has CREST. My morphea was confirmed by biopsy and it lasted for about 3 years. It was a large patch on the skin of my stomach. It faded about one year ago. I also have CREST, confirmed by the presence of anti-centromere antibodies and anti-mitochondrial antibodies, Raynaud's, telangectasias, sclerodactaly, and calcinoses, among other things. I just wish I knew what is going on internally or on a microscopic level that causes some people to have both conditions when it is so unusual to have both.

Thank you to any of you who have any thoughts.

One uncool mom

#17 Shelley Ensz

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Posted 21 July 2011 - 01:52 PM

Hi One uncool mom,

Welcome to Sclero Forums! I'm glad you've joined us and send my best wishes to you for coping with both localized and systemic scleroderma at once.

Really and truly, I have no medical training at all. Honest! :VeryHappy:

I agree, you are entirely correct in that it is commonly acknowledged that morphea can fade, and in a few cases even go away entirely, in the first two to five years or so, even without any treatment at all. However, and please correct me if I'm wrong as we always strive to be as accurate as possible around here, I have not heard of a documented case of morphea occurring as briefly as Marsha described. Therefore, it is very likely that she had something other than morphea, and if it ever recurs, she should see her doctor to find out exactly what is going on.

We have a few other "rare birds" around here as well. Amanda, for example, has the double-whammy of both, so I'm sure she'll be piping in soon to greet you, as well.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#18 Amanda Thorpe

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Posted 21 July 2011 - 01:54 PM

Hello Oneuncoolmom

Welcome to the forums and I'm lovin' the name! I think what Shelley meant is that morphea patches don't come and go in a few months, yes the localised form of the disease can wax and wane the same as the systemic form, but this wouldn't be over a period of a few months but rather years.

I have morphea, bullous morphea and diffuse systemic scleroderma with gastrointestinal involvement, serious heart involvement, fatigue, foot ulcers, mobility issues including joint contractures and sclerodactyly. Why I have 3 types of the disease goodness only knows! I am into my 4th year and there are no signs of the disease(s) letting up just yet. :angry:

Take care and keep posting.
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#19 erika

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Posted 26 July 2011 - 08:41 AM

Although I still do not have proper diagnosis (lab tests negative) my rheumatologist assumes that I have limited systemic (CREST). Additionaly, for 2 years I have a shiny itching part around my belly button which has started to collapse (small hole within the tissue 3-4 mm wide). rheumatologist thinks this might be morphea. For me it would be a very favourable diagnosis because it would mean that there is a chance that I do not have difuse sclero.

Regards and a wish for long hot summer.

Erika

#20 uknlv18

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Posted 26 July 2011 - 03:32 PM

Hi everyone

My whole thing started with Morphea and Lichen Sclerosus, so I too have an overlap of illnesses. The morphea flares and fades, but never goes away completely. Moisturizer does not cure it up for me either. It is itchy when I get a flare, and the area swells up in my case as well. It is on my right wrist right over that little bone there, and when it flares I get the huge dent in my wrist, looks horrible.

And welcome to all the new comers to the forums!

Jean