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I am 2 weeks into my diagnosis of Sine scleroderma. I have lung involvement and am having some stomach issues I’ll be getting tested for. Is there anyone on here that has Sines? 

 

Besides fatigue and organ involvement, is it possible to get joint pain through out my body? Ribs and stomach are tender. 

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I have limited scleroderma with no visible signs. The worst bits are the agonising aches and pains around the joints and terrible cramps.

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Hi Beckybee; welcome to the forums. 

 

My son was initially diagnosed with sine scleroderma, but that was changed to Undifferentiated Connective Tissue Disease ( UCTD) by the Sclero specialist. He had positive blood work and internal involvement, but no skin, Raynaud's or capillary involvement. His main problems were his vocal cords, esophagus, diaphragm/lungs and major fatigue.

 

He was put on plaquenil and has been on that for eleven years now, with no problems.

 

Take care, everyone.

Margaret

Mom to Gareth, 30 years old, DS/ASD

 

 

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Hi Beckybee,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with sine scleroderma. It is unfortunately one of the rarer types and in the absence of visible skin involvement, "Scleroderma sine Scleroderma," is diagnosed, which basically means "Diffuse Scleroderma without Scleroderma (skin involvement)." For such a complex disease as scleroderma, we do recommend that our members consult a listed scleroderma expert, as specialist knowledge and expertise are needed to ensure that the treatment you receive is as successful as possible..

 

I have limited scleroderma, but like you have lung involvement; I was very fortunate in that I was diagnosed very quickly and treated by a top lung hospital, whilst the fibrosis was still mainly at the inflammation stage and it was very successful.

 

Certainly joint pain is one of the symptoms of scleroderma and I've included a link to our medical page on Musculoskeletal Involvement, which includes joint pain. The pain in your ribs and stomach are not necessarily a symptom of scleroderma per se, although it could perhaps relate to the stomach issues you're experiencing. A rule of thumb is that any unexplained or new symptoms should be queried with your doctor/scleroderma specialist, as sometimes a scleroderma diagnosis can blind you to anything else which might be going on.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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On 7/10/2018 at 10:41 AM, dimarzio said:

I have limited scleroderma with no visible signs. The worst bits are the agonising aches and pains around the joints and terrible cramps.

I truly hope you find some kind of relief, as I am going through this also as I have crest syndrome.

With Respect 

Charly 

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Hi Charly,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering unpleasant symptoms due to limited scleroderma, aka CREST.

 

I do hope that you're receiving suitable treatment from a listed scleroderma expert, as this complicated disease does require specialist knowledge and expertise , in order for it to be dealt with correctly.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Beckybee,

 

I was diagnosed with Systemic Sclerosis sine Scleroderma in the autumn of 2006. I had already developed ILD and pulmonary hypertension. I'm still going strong but in the years intervening have developed Grandma Syndrome, GI issues including a wicked spare tire and jelly belly, and worst of all, a tendency not to take anything too seriously.

 

I was one of the first patients on Letairis, and am still on it, and have been on mycophenolate mofetil for most of the past 12 years. I have had a Nissan fundoplication but now have no peristalsis in my esophagus, so the fundoplication may be revised. My ILD is classed as moderately severe, and if my most recent echo was accurate, my PH is severe. That all sounds awful but I am still doing everything I used to, albeit slower (well, I *am*71!).

 

So few people know much about Scleroderma and fewer still have heard of 'our' form. When you ask about what to expect you can get some pretty varied answers. What I can tell you is the quality of your life will be up to you. Attitude and doing all the things to stay healthy (good diet, lots of exercise, good sleep habits, and counseling if needed to develop good coping skills). Be a nag until your muscle/joint pain is adequately addressed.

 

Good luck, Becky, I hope your life is as much fun as mine is.

 

Jeannie McClelland

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Hi Beckybee,

 

Please excuse me while I interrupt this thread to say, wow, Jeannie, it is always such a delight to hear from you! 

 

:hug-bear::hug-group::hug-bear:


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.

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Hi Jeannie,

 

How lovely to hear from you again and I'm very pleased that you're doing so well. :yes:

 

I can certainly relate to the spare tyre and jelly belly (sadly!!) :wink: :lol:

 

Best wishes,


Jo Frowde

ISN Board Member

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I had a jelly belly/spare tire amounting to around 14 pounds.  In the last few months, I have lost 15 pounds.  Spare tyre is still there, belt size is the same and I now have thin arms, legs and shoulders. :sad:

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Anyone have success with Cellcept for cardiac involvement? Or even has it stabilized other organ involvement?

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