oneuncoolmom

Systemic Sclerosis and Morphea

18 posts in this topic

Hi Everyone,

 

I've had Raynaud's for about 18 years and never thought much of it. About 8 years ago I got the red halo above the cuticles on my hands (nailfold redness) and thick yellow cuticles with brown dots. I figured all of that was from having Raynaud's for so long. About 1 1/2 years ago I got a discoloration on my abdominal skin and also didn't think much of it, but decided to see a dermatologist a few months ago for that and for my ugly cuticles. The abdominal. skin biopsy showed morphea and the dermatologist. thought I should see a rheumatologist due to the presence of morphea AND Raynaud's. The rheumatologist found positive ANA, ACA & AMA in my blood and noticed telangiectasias on my hands and face and thicker skin on my fingers, so she thinks I either have limited sclero or pre-sclero/SSc.

 

My question: Has anyone ever had morphea WITH systemic sclerosis, as the two together are supposed to be quite rare? Also, since I figure that I've actually had systemic sclerosis for about 8 years (the above-mentioned nail findings are indicative of it), and have not developed any further organ involvement that I know of (just had negative echocardiograms and pulmonary function tests), have any of you developed the serious organ problems many years or decades later?

 

Thank you so much for answering my questions, if you can. I am new to all of this and pretty scared!

 

All the best to all of you,

 

Oneuncoolmom

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Hello One!

 

Welcome to the Sclero Forums. I'm so happy you have joined us. You will find a wealth of information, support and friendship here.

 

I don't know the answer to all of your questions, but my rheumatologist did tell me that the majority of the progress takes place within the first 5 years, and that I should expect to stay about the same for the rest of my life other than the possibility of pulmonary hypertension.

 

I know others will chime in and help you with the other questions.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Pamela,

 

What a reassuring response! I assume you are talking about limited systemic sclerosis and not diffuse, because that is the kind I have and I imagine you have? Even though pulmonary hypertension is very serious, I understand that much better drugs have been developed in the last few years that can keep it under control for a long time or possibly indefinitely. It would be wonderful to not have to worry incessantly about what's going to happen next.

 

Again, thank you so much for answering so quickly. I'll probably talk to you again soon.

 

Best to you,

 

Oneuncoolmom

(Margo)

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Hi One,

 

Welcome to our forum, this is a great place for info and support. I was diagnosed with morphea a little over a year ago. I also have Raynaud's, but didn't know that was what it was until after my diagnosis. Mine is mild but increasing in severity, and my nailbeds seem fine. I have negative ANA's, but I also have moderate reflux, mild telangiectasia, shortness of breath, and a few years ago had tight shiny skin on my hands, and curling fingers, but they have softened. My primary care doctor suspects limited scleroderma, but doesn't know enough about it to give me an actual diagnosis. I was supposed to see a scleroderma specialist this week, but was out of town due to a family emergency. I am waiting to have the appointment rescheduled. It will be very interesting to me to hear what the specialist has to say.

 

My morphea is on my trunk and chest area (I have 34 patches) but is considered "superficial, non-classical" as it is very mild, and most patches have burned out and are just brown scars now. What are the characteristics of your morphea?

 

Hang in there,

 

Bunky

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Hi Margo,

 

Yes, I have CREST (limited) however I noticed in chart notes for the past year (that I just got while applying for disability) he has for my diagnoses "severe diffuse scleroderma". It was a bit of a surprise. But face to face he tells me I have CREST. :) I'm going with that because I'll live in denial as long as I can. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi, Margo and welcome to the forums.

 

You ask some intelligent questions. I don't know any more about morphea than what I have read here on the site. One thing I have learned, though is that you can't depend on anything to follow a set of clearly defined rules. I have given up worrying about a specific diagnosis (as my doctors seem to be unwilling to give it) but I am comforted knowing that they are looking out for symptoms of deeper problems. You have already been reassured that heart and lungs are okay. My rheumatologist said that he is not worried about heart and lungs because they will present with warning symptomology. Kidney issues are important to watch for as they can sneak up on you. He has me checking my blood pressure regularly.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Bunky,

 

My morphea is one large U-shaped patch going across my stomach. The color seems to be fading a little. Ours sound different, in that you have 34 patches, though in reading everyone's messages, I'm seeing that every case is different. Given that you have many patches, is each one small?

 

Can you write again after you see the sclero specialist? By the way, I'm 56. How old are you?

 

Wishing you the best,

 

One uncool mom

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Hi Pamela,

 

Thank you for your latest reply. I asked you about your having CREST because I have read that in diffuse, most of the organs that are going to be involved are known in about the first 3 years, but I couldn't find that kind of info for CREST. Just as you said, I have found the same information about pulmonary hypertension possibly expressing itself much later, but, again, I don't know how they define "later". Do you know if any of those answers are on this site or somewhere else? I've read a lot of this site and done lots of googling.

 

Hope you are feeling well,

 

Margo

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Hi Jefa or Carrie?

 

Thank you for your welcome and for responding. Even though your doctors do not want to put a label on your condition, do you think your features resemble diffuse or limited more closely? The reason I am asking is that I thought, though I may be wrong, that kidney involvement was more common in diffuse---I may be wrong.

 

Do I interpret that your doctor feels that since lung or cardiac problems give plenty of warning, they can be adequately treated if caught early? I've read conflicting information, though I think part of that is due to some older information. From what I can tell, some very new drugs have been developed that make a real difference compared to just a few years ago when the cardiac and lung problems were virtually untreatable. Is that what you have heard or read?

 

Thank you for your reply. All the best to you,

 

Margo

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Margo,

 

I'm 39 and I have one patch that is about 4 inches by 3 inches, but the rest are much smaller. The large patch was the first one, and about 4 months later I started getting more. They looked like red bruises when they first came out, and then slowly turned brown. When I was diagnosed with morphea I started researching and realized I had many symptoms of limited, but my doctor here doesn't feel comfortable giving me a diagnosis because she never heard of scleroderma until I was diagnosed with morphea, although she is very supportive. She was very glad I found an expert and we are both anxious to hear what they have to say.

 

Take care and feel free to send me a private message if you have more questions.

 

Bunky

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Hi, Margo,

 

The symptoms I have don't really give me enough information to guess whether my condition would be considered limited or diffuse. I agree with my doctor that whatever I may have is not very aggressive. We are treating with a DMARD (disease modifying anti-rheumatic drug - Plaquenil), an NSAID (etodelac) for the inflammatory arthritis, a proton-pump inhibitor (omeprazole) for the reflux and fluoxetine for depression which also helps with the Raynaud's symptoms. I haven't had any problems with digital ulcers. Calcium and vitamin D supplements were also prescribed to help prevent bone loss. I think worrying about what you 'might' face will cause stress which will certainly add to any potential problems. You may never have any major organ involvement. The disease manifests symptoms and progresses differently in everyone. Any statistics are only valuable within the precise context for which they were gathered. My advice to you is relax a bit. Stay informed and build a good relationship with your medical team, but don't let it overwhelm you. Enjoy life. :D


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi One:

 

I've had Raynauds for the last 17 years, and a few tell tail signs of CREST in between. I was officially diagnosed in 2007 with CREST. I too, had a very large light brown patch on my abdomen for the last 3 years. What I find funny is that my general practitioner and/or his nurse never took notice nor questioned this thickened patch (before they were aware of my CREST). I presently have developed a two inch long one on my right upper arm. The way I figure it, they don't bother me, so I won't bother them. Clothing is a wonderful thing; hides many imperfections. At this point, I'd never make it as a nudist :lol: .


Tru

 

It is what it is...........

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Hi Margo,

 

This site here is the best I've found. I don't know if you'll always be able to find cut and dry answers to your questions. I hope we are able to put your mind at ease or help you in anyway we can!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Tru,

 

How interesting---our histories sound somewhat similar. Did you actually have a biopsy of your patch that showed it was morphea? Also, what were your older CREST signs that came and went and what were the newer signs that more recently caused you to be officially labelled as true CREST? I hope you don't mind me asking you so many questions, but like most of us, I don't know anyone who has been through this. If it's too much for you to answer all these, just please say so.

 

Do you mind saying how old you are? I'm also wondering if any of your CREST symptoms are really bad or just a bother. Do you have fatigue?

 

Hope all is well and I hope to hear from you soon.

 

Thank you so much,

 

Margo

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Hi Pamela,

 

All of you have already been of great help, and I'm feeling a lot better emotionally when I see how may people are coping so well. I will comb this site more carefully to find more answers and information.

 

Hope you are having a nice Sunday and Mother's Day (if applicable).

 

Margo

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