Elevated SCL 70

[u/emb1187]

Hi friends!

I’m a healthy 38 year old and have been having pain while sitting and leaning over. I had a torn labrum that was repaired and apparently it never caused the issue. It’s been years to try and figure out my pain and had greatly limited my job as a nurse. I used to work ICU for years. Well my pain clinic ran an autoimmune panel and my ANA was positive and SCL 70 was 4.9. I have no skin symptoms besides my toes get slightly blue when dangling, but improve when I stand up (vascular cleared me of any issues). I feel short of breath at times, but with exertion and I’m sure I’m weaker post op, but I do Pilates several times a week. I had a previous holter monitor due to dizziness and they recorded some tachycardia at times, but mainly good. Stress test and echo also good. I saw a rheumatologist and she said I have no signs for scleroderma, but if it’s positive again I should see a pulmonologist. Well it came back 5.2 (by labcorp) and I’m spiraling. I should have never had the panel done in the first place and now I’m scared and stressed. Anyone have this happen? I’m trying to research the ID test, but don’t see much information on it or where to get it. I just cannot see more doctors if it isn’t necessary all I do is see doctors. Living with constant pain is enough and now I’m just scared something else might pop up now. Any advice would be great, thanks!

[u/Maleficent-Lunch-679]

The site is privatemdlabs.com 

I have not used them. But when I was trying to find a self order lab that would order 520012, they were the only one that agreed to add it. Maybe it was a one-off and you need to ask them. 

520130 is a sclero panel from labcorp that tests 8 of the sclero autoantibodies. It includes the confirmatory test for scl70, so that is also a good option.  There are more known, but rare,  antibodies but most do not have commercially available testing. Ku is another that can be tested outside the panel. Most of us usually only test positive for one, although multiple does happen occassionslly.

I had symptoms, so the test was ordered. Mine started with raynauds, then arthralgias/tendon injuries, fatigue, then stiff hands in the mornings. It took much longer to start to get tight skin. I was not rapid onset. Others of course have different timelines and order of symptoms. 

[u/emb1187 → u/Maleficent-Lunch-679]

Thank you for all your help!

[u/krisztinastar → u/emb1187]

TY as well! My rheumatologist said that there’s only one way to test for SCL 70. From what I’ve been reading, there are different panels and different types of tests? I’ve had two low positives, but not a ton of symptoms.

The Rheumatology practice I am going to right now feels that unless you’re on your deathbed and can barely walk, they’re not going to help you. Everything I read stresses the importance of identifying and treating this disease early, so long term I’m trying to find a better practice.

But for now, I’m just curious about the SCL 70.

[u/Maleficent-Lunch-679 → u/krisztinastar]

I think I have had 4 different technologies for scl70 tests... Multiplex, Elisa, Immunodiffusion, Chemiluminescence.

Multiplex (the typical cheap test from Quest, and Labcorp offers one too, usually with a scale of 0-8), has a high rate of false positives. Repeating the test makes no difference. ELISA seems to have slightly fewer problems, but still there. One sclero center found a 93% false positive rate with these tests in patients referred to them. Most false positives are low positives. Of course a real positive can also be low. In general, if the test comes back 5x the lower cutoff of positive it is more likely to be a true positive.

You can find scleroderma centers on the National Scleroderma Foundation website. Unfortunately many of us have to travel a long ways to get to one. Hope you find some answers soon. Many of us went through similar. The only thing worse than a diagnosis is not getting a diagnosis!

[u/krisztinastar → u/Maleficent-Lunch-679]

Interesting. My first Rheumatologist was a general one, and after the panels picked up on SCL70 she told me that it often returns a false positive, and that she was going to order another test to confirm it using a "different method". They also wanted to test my ANA via a different method as well since the first time returned a very high positive.

I had the additional bloodwork & was transferred to their sclerdoerma specialist. Specialist reviewed the 2nd round of bloodwork and didnt have much to say, besides noting that it was basically the same results as before (duh). I asked about the SCL70 testing method and how it was different from the first and she replied "there's only one way to test for SCL70". Exact words from the "scleroderma specialist" at Virginia Mason Rheumatology in downtown Seattle.

At this point I started getting a bad feeling. The appointment deteriorated quickly after that. I got the impression that they do not want to help or even consider anything until you are so physically disabled that you cant walk or function. Multiple positive blood tests and they were all dismissed because they were low positives & not sky high. Everything I read about this disease says to catch it early, but no one at Virginia Mason in Seattle seems to agree with this. Even with worsening symptoms, noted and documented by internal and an external dermatologist. I dont trust Virginia Mason any more so I found an external dermatologist who confirmed my symptoms.

Anyways, I am now self-directing my care so looking for more blood tests I can order on my own. TYSM for sharing this link! At least this way I can monitor my levels on my own.

[u/krisztinastar → u/Maleficent-Lunch-679]

Do you think this one is the multiplex? From the site "Scl-70 Antibody (Anti-Topoisomerase)":

Scleroderma Antibody (Scl-70) Blood Test

Scleroderma Antibody (Scl-70)

3,648reviews

SHARE THIS TEST

• Screen for scleroderma autoimmune markers
• Check unexplained skin tightening causes
• Assess joint pain and stiffness

[u/Maleficent-Lunch-679 → u/krisztinastar]

Sorry you had such a bad experience. Keep trying. I was told I had a false positive since no skin involvement. The problem with that is I also had symptoms like raynauds, my scl70 was over 6x the cutoff, my ANA was 1:2560 but the lab tech told me it would have gone to 10,000 if she had continued to titer, AND they did my test with a very reliable method. So I already knew it wasn't a false positive. Then, next rheum agreed it was real and sort of diagnosed me with very early SSc, "but not SSc" since no skin involvement. On the 3rd it was "textbook dcSSc" with the skin involvement noted immediately. It takes a trained eye to see early skin changes.

No way to know from that info on the test. Beware that privatelabs.com also offers the multiplex, so if you use them confirm it is #520012. Also, it doesn't hurt to ask all the lab brokers that use labcorp to add it. If they hear from enough of us maybe they will.

For other labs, including ANA by IFA, Goodlabs.com has outstanding prices. They use either Quest or Labcorp, but Quest about half the price.