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Cde311

Positive ANA and scl -70, symptoms and stem cells

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Hello, I'm new here and just got my lab results today.

 

I have not spoken to my doctor yet, however from what I’ve gathered high scl-70= diffuse systemic sclerosis which = poor prognosis and it is pretty scary being a 33 year old mother of a 6 and 3 year old. The possible symptoms I have are joint pain and GERD. No skin issues or Raynaud's etc.

 

Anyone else with symptoms that started out like this? I’m also curious if anyone has done or looked into stem cell treatment for this. 

 

Thank you

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Hi Cde311,

 

Welcome to Sclero Forums. Under the circumstances, it might be pretty good to talk to your doctor.  It'd be reasonable to set an appointment to discuss these results and to begin rounding up a scleroderma expert. 

 

I know the first impulse most of us have is to be scared out of our wits and want to make it all go away (like with a stem cell transplant). But, trust me, very shortly you'll have a more balanced view, and realize this is far more often a chronic illness that is manageable.  Joint pain and GERD are usually especially manageable and perhaps that's all you'll ever experience from illness, because there is no predictable progression for scleroderma (it can wax and wane all on it's own, even without any treatment of the underlying condition.) 

 

Also you'll find reassurance from many of us who were given a brutal and hopeless prognosis decades ago, yet we are still alive and kicking!  Treatments and clinical trials are continually improving quality of life and outcomes for people with scleroderma and related illnesses.  

 

Generally speaking, stem cell transplants are reserved for those of us with very rapid onset and severe diffuse scleroderma; it's not the common or usual treatment of choice, given that it can sometimes have drastic or fatal complications with scleroderma.

 

Fortunately, joint pain and GERD are not life-threatening and are easily managed with ordinary symptom treatment. Not having skin involvement or Raynaud's at this point is excellent and is likely a harbinger of a slow disease course or good long term outcomes.  In fact, you may not even reach the clinical criteria for diagnosis yet, which often relies on the presence of symptoms such as Raynaud's, pulmonary fibrosis, or tight skin, for example.  But there is an effort afoot to try to identify "early stage" scleroderma. 

 

You may fit that category but be aware that 50% of people with some symptoms of connective tissue disease and some positive blood work never go on to develop a full-blown specific disease such as scleroderma. Thus, the odds are excellent that you might be put in a "watch and wait" category for regular follow-ups. Now, that's a good thing, not being so sick as to ever acquire a diagnosis, but it's a bad thing because of the psychological limbo it can leave people in, wanting a diagnosis to verify it's real or that we're not faking it, for example. 

 

As it happens, I know people with a few symptoms and some antibody or another who've been followed for ten years before they were declared to be free of connective tissue diseases, such as lupus or scleroderma; and some who were diagnosed and then later on the diagnosis was overturned.  Imagine, all that time spent convinced they might maybe were going to die soon, and then disappointing everyone by keeping on ticking and then, being healthy in the end, after all that physical and emotional ruckus! 

 

For the time being, you are alive, you are basically okay without life-threatening complications (that we know of.)  But you are most understandably feeling threatened by the scleroderma monster (we all were, all of us who researched anything, at least.)  That should fade within the next few weeks, as you gain insight and knowledge about the disease and the people who have it. 

 

So, enough of this. Your first obligation is to seek expert care and evaluation. Quite likely, you'll end up in the watch and wait category (merely because the vast majority of us do, often for many years before we know what end is up).  It's an average of six years from onset to diagnosis for women, which is adverse by any measure, but it's also a reality that means we need to find ways of coping in the meantime.  

 

In particular, you might want to study our information on Diagnosis of SclerodermaEndocannabinoid System and Scleroderma, also Skeletal Involvement,  GERD, and, most importantly of all, listed scleroderma experts

 

I'm glad you found us.  Things are the scariest they'll ever be right now; you should feel a lot better, or at least more comforted, soon, now that you're around people who "get it." 

 

:hug-group:


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 Cde,

 

Welcome to these Forums!

 

I'm sorry to hear that you've had worrying blood test results. The subject of positive blood test results is a popular favourite on the Forums and I would reiterate the advice we always give, which is that positive blood tests do not necessarily mean that you will go on to develop full blown scleroderma. The reverse is also true. Far more important in obtaining a diagnosis are the clinical signs, such as Raynaud's, which does seem to affect the majority of scleroderma patients.

 

As Shelley has advised, your first step would be to obtain a referral to a listed scleroderma expert, as this is really the best person to advise you about your blood tests and symptoms. Considering stem cell transplants at this stage is a little premature and smacks of trying to crack a nut with a sledge hammer. It is a very intrusive and complicated treatment and not something to be undertaken on a sort of whim. 

 

Many of our members have been dealing with scleroderma for many years (including Yours Truly :wink:) and are no means ready to throw in the towel yet! :happy:

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Thank you Shelley and Jo; these answers have helped me a lot. I have an appointment setup to see my rheumatologist on November 7th and man do I have a lot of questions, I hope he’s ready haha. 

 

Thank you again. ♥️

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Okay Cde311, we expect you to get such a handle on this that  down the road, you'll be able to pitch in and help us all talk other newbies off the cliff! 

 

We all know the feeling, and we all need things explained from a variety of sources to start getting the hang of this whole scleroderma misadventure.

 

:hug-group:


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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I'm new here too. I tested positive for ANA and Anti-Scl 70 about a month and a half ago. I'm 28 years old.  My symptoms started a couple years ago, but they were vague and varied and would come and go (inflamed eyelids/dry eye/eye sensitivity,  joint pain, especially the toes, fatigue, difficulty breathing, excessive sweating, stomach bloating)

 

Anyway, I've read the same thing, that the positive  Anti-Scl 70=poor prognosis. My rheumatologist explained that the prognosis usually depends on how far along your disease has progressed when you begin treatment. He told me that based on my symptoms he feels I'm still in the early stages of the disease. It sounds like you are too. I don't know if that helps at all.

 

 

 

 

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