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Positive labs but only Raynaud's for 15 years


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#1 GatorGal

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Posted 22 July 2011 - 10:58 AM

Hi, I'm a new member to the community and am curious about others' experiences. I've been followed by a rheumatologist since I was 15 years old when I first developed Raynaud's. I continually have high ANAs (like the lab stops titering high) as well as a positive SCL 70 but I've had no hallmark symptoms of scleroderma outstide of the raynauds. Echocardiograms are always clean, too. One of the PFTs, not sure which, was slightly abnormal but my rheumatologist assured me it wasn't the test most tied to PAH or ILD.

I truly believe I'm healthy now and my doctor tells me everytime I come in not to worry. I rarely think about scleroderma, usually just a few days before my six month check-ins. I am so very fortunate to be in such fantastic health! But I just recently told my boyfriend who is an anesthesiologist about it and I think it shook him up. All the studies I've seen say that while SCL 70 and an anti-nucleolar ANA are specific for scleroderma (and are correlated with some of the more serious complications), they should only be used secondary to clinical symptoms.

It's been 15 years of purple toes and fingers. Annoying yes, but I just feel so grateful that's all it's been and I want to believe that is all it will ever be. Is it possible after 15 years I'm in the clear? Can there be a subset of the "healthy" population that also has positive SCL 70 but because they don't have any symptoms, there's no need to test? Can I only ever have to worry about staying warm despite some positive values on the more scary lab tests?

#2 Joelf

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Posted 22 July 2011 - 01:54 PM

Hi Gatorgal,

Welcome to these friendly and informative forums!

Unfortunately Scleroderma is an incredibly difficult disease to diagnose even with positive antibodies such as you're describing. Many people test positive with the Sclero antibodies and yet do not go on to develop full blown Scleroderma. For instance, I myself have tested positive for the Anti-PM/Scl antibody and yet thankfully have not developed Polymyositis although I have Systemic Sclero with lung involvement and Raynaud's. We have another link here regarding Antibodies which I hope you'll find interesting and informative.

Although I very much enjoy telling my long suffering doctor how to do her job, I have no actual medical training and so couldn't really predict whether you will develop any more Scleroderma symptoms or whether you'll remain as you are. I do know that in my case my symptoms do seem to have stablised (I've received excellent treatment for which I'm eternally grateful!) and I'm hoping that I should be able to tick over quite well as I am at the moment, but who knows!! ;)

I'm very pleased that you've joined our community and look forward to reading your future posts. :emoticons-group-hug:

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#3 Amanda Thorpe

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Posted 22 July 2011 - 03:21 PM

Hello Gatorgal

Welcome to the forums! As you know you could never have anything but Raynaud's forever but no one is going to be able to tell you for certain.

Blood work alone cannot rule scleroderma in or out because some people have positive ANA, SCL-70 and so forth and no symptoms and some people, like myself, have negative ANA, SCL-70, normal rheumatoid factor but in fact have diffuse scleroderma. My blood work says I'm perfectly well but my symptoms say something very different!

Here's what is working in your favour, should anything even turn up you and your doctor(s) will be on it immediately whereas most people with scleroderma take years to get a diagnosis.

Take care.
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#4 Snowbird

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Posted 22 July 2011 - 06:55 PM

Hello GatorGal,

These autoimmune diseases are always a mystery. I'm pretty sure we can all vouch for that. Unfortunately, that's also why there are no definitive answers for any of us. It's always unknown, never an easy straight yes or a no.

The good thing for you, however, is that for 15 years, your only physical symptom has been Raynaud's. Hopefully nothing else will change for you and you'll stay just the way you are without any other symptoms.

I'm looking forward to your posts.
Sending good wishes your way!

#5 debonair susie

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Posted 23 July 2011 - 10:25 AM

Hi Gatorgal,

I'm so glad you've joined our sclero community here.

I, too am happy to read of raynauds being "alone", where symptoms are concerned. You spoke of no treatment for your symptoms from raynauds, however and was just wondering if you are taking medication to help?

I also hope the best for you, that nothing else presents for you!

May you continue to feel as great as you do and your life be equally as wonderful :emoticons-yes:
Special Hugs,

Susie Kraft
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#6 GatorGal

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Posted 23 July 2011 - 02:38 PM

Wow! Thank you all for your warm wishes and support. Makes a person feel pretty special :)

I have been prescribed 2.5 mg Procardia for my Raynaud's but I'm honestly not as faithful to it as I should be except during the winter. And I imagine at our next check in we'll consider upping that to 5mg. My rheumatologist has warned me multiple times that I shouldn't be cavalier about it. I just always assume my circulation is going to come back :) The question with my Raynaud's is not how often I have attacks but how often I don't! I don't really keep track but I probably have at least 2-3 attacks a day in one or two fingers... office buildings are not much fun. And I do use the little heat packs, gloves, warm socks, etc in the wintertime.

Completely agreed on the benefits of close monitoring. I kind of wish I didn't need it. Hard not to feel like "damaged goods" when you have to get your heart and lungs checked out yearly and you're 30 years old but what a blessing to have one of the best rheumatologists in the country on my case (LOVE Dr. V. Steen) and to also be so close to Johns Hopkins if needed. Very, very fortunate. But I do hope I never have to see them for anything more than what's on the plate today!

Sadly, there's nothing I've found- medication or protective clothing- that keeps my Raynaud's 100% at bay. Anyone with severe Raynaud's have anything that works for them?

#7 Shelley Ensz

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Posted 23 July 2011 - 03:19 PM

Hi GatorGal,

Welcome to Sclero Forums! I'm sorry you have Raynaud's and positive SCL-70, and to have had to deal with uncertainty for 15 years. You will be an excellent comfort and helpfulness to many other forum members who have "only" a positive SCL-70 and few or no symptoms of systemic scleroderma. You must have developed a great many ways to positively cope with things emotionally, while still staying vigilant enough to get your regular testing. My hat is off to you!

:emoticons-group-hug:
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.

#8 marsha

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Posted 23 July 2011 - 05:03 PM

Hi Gatorgal and Welcome,

Although Raynaud's is a bothersome symptom to have I am also glad that you don't have any others.. How does the 2.5 mg of Procardia work for you in the winter? Does it help or stop the attacks? I took Procardia for 1 year and I was taking 60 mgs and it helped some with my hands but not my feet at all. You need to remember to be faithful all year long with your meds --it's really important!

Welcome to the forums and many hugs and warm wishes,

Marsh

#9 SaraM

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Posted 29 July 2011 - 09:55 PM

Hey, Gatorgal! I have Raynaud's and have had it for 4 1/2 years. I was living in Syracuse, NY for most of those years, and every year things got worse. They first diagnosed me with Raynaud's but didn't do the sclero tests. I started meds 3 1/2 years ago. Eventually, they did the blood work. Like you, I have not had any major symptoms besides the Raynauds. I have asthma, acid reflux, irritable bowel, and sleep apnea which the doctors say MIGHT be linked. Anyway, each winter my Raynaud's has gotten worse and worse. Although I have moved south (D.C. area now), I have more flare ups but also a lot more ulcerations. I didn't really take it seriously the first year or two, but by last winter I had no choice. I had at least two or three fingers bandaged because of the sores on them, and they did not heal until June! LAST summer my sores never healed at all. If you are near Hopkins, I suggest trying to get into the Scleroderma Clinic there. I went in January, and they put me on Revatio, which is actually an erectile dysfunction medicine, but it has put the color back into my hands and feet and also got enough blood flow for my hands to heal. The test are frustrating and scary, but I guess it is a "just in case" thing we have to live with. As for the Raynauds, take care of your hands, and ask about Revatio. It has been the most effective medicine I have found yet! Good luck.

Warm Hugs,
Sara

#10 CraigR

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Posted 30 July 2011 - 07:28 AM

I hate to be a bearer of possible bad news but-

I was first diagnosed with Raynaud's 34 years ago, given the "CREST" diagnosis. For the first 20 years the only symptom was Raynaud's. Then I developed secondary Sjogren's, pulmonary hypertension and myositis, and 9 years ago, lymphoma. My father had a similar course of the disease (no lymphoma, but lung disease and kidney failure).

Oddly, I have a negative SCL-70 and have never had gastric symptoms. So it's very difficult to tell. I knew a woman who lived to be 93, having been diagnosed with sclero for 49 years.

Craig

#11 Shelley Ensz

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Posted 30 July 2011 - 07:54 AM

Hello GaterGal,

We do have an article on our main site that you'd probably be interested in. Low Risk Factors for Scleroderma, where we have this:

Long Term Follow Up of a Cohort of Patients With Positive Antinuclear Antibodies (ANA) and Raynaud’s Phenomenon (RP) in the Absence of Connective Tissue Disease at Initial Evaluation. Initial evaluation indicates that there is a subset of patients who remain with only positive ANA and RP and do not develop a defined CTD. Marie S. O'Brien. 1881/553 ACR 2006.

To further quote from that abstract, "
4 patients followed ≥4 years progressed to a CTD (connective tissue disease), whereas 11 patients remain without evidence of a defined CTD. The results with a long term follow up of one of the largest populations with RP and positive ANA in the absence of CTD at initial evaluation indicate that there is a subset of patients who remain with only positive ANA and RP and do not develop a defined CTD."

It looks like you might have a better than 50/50 chance of never developing a defined connective tissue disease, especially if you have already made it 15 years, as their usual rule of thumb is that CTD will show up within about 7 years of the time Raynaud's and positive ANA begin. That said, there are simply no absolute guarantees -- for anyone's future health and happiness. But statistically you would probably now be in much greater danger of the more common health hazards, such as cancer, heart disease, and diabetes.

What's that old line, if you want to live to a ripe old age, go get a chronic medical condition and then take good care of it. So this might even eventually become the secret to your longevity.

As for testing, once an ANA has been proven to be positive, many of us don't see a need for further testing after that, regardless of the presence or absence of symptoms. It's only a clue, actually -- and like in any good mystery, clues can be misleading.

This does not mean that you should drop off the face of Sclero Forums, though. It simply means that you'll likely be able to share fun and friendship and support around here for a great many years to come!

:emoticons-line-dance:
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.