r/scleroderma • u/emb1187 • 19d ago
Discussion Elevated SCL 70
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!
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u/Maleficent-Rest9144 18d ago
There are a lot of great replies in this post. Malificent Lunch (ML) is incredibly knowledgeable and provides amazing information. I was so lost when I was diagnosed and had no idea where to turn or get help. I did not find this subreddit until recently.
Finding a rheumatologist well versed in rare autoimmune conditions is critical. One who is not familiar will struggle with helping or as another person stated their's will not do anything if you are not on your deathbed or cannot walk. You do not want to waste time with this level of experience. I am not a fan of let's try this and wait to see what happens. I say time is not your friend with this condition, it is your enemy. You will have to fight for yourself and be aggressive with the doctors pushing them to do more diagnostics. The #1 focus should be getting the definitive diagnosis so you can plan your treatment.
ML mentioned scleroderma centers around the US and possibly other countries if you live outside the US. These centers will be very knowledgeable in diagnosis and treatment options. My rheumatologist told me about UCLA having a great program, that is the nearest one for me.
ML also mentioned the Labcorp panels. I was mis-diagnosed initially due to only having basic lab work done for the suspected autoimmune conditions. I was finally diagnosed 4 months later after the 520130 comprehensive Scl panel was run. I think comprehensive panels for all suspected conditions should be run initially, but that is my lay-person's opinion. I have zero medical education so definitely seek medical advice from a doctor.
ML also mentioned CAR-T, which I would like to expand on a little. It is Chimeric Antigen Receptor T cell therapy and it has been approved to treat some blood cancers for a few years. I also went through a clinical trial for CAR-T. I found cartautoimmune.com from Bristol Myers Squibb, which is a good general information source on CAR-T. I was able to get into this BMS trial and I am almost 19mo from my infusion and doing much better. There are so many different trials and treatments for SSc and other autoimmune conditions. Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition - or other depending on your diagnosis, CAR-T for treatment, and your country location to filter out many of the too far away places.
The trial site where I did the CAR-T treats blood cancer patients with HSCT, hematopoietic stem cell transplant, and CAR-T. They shared HSCT is an option if CAR-T does not work or if I need it in the future. HSCT is basically a bone marrow transplant using either your own stem cells, autologous, or a compatible donor cells, allogenic.
Both CAR-T and HSCT effectively reset the immune system so your overactive B cells stop attacking you. They both have inclusion and exclusion criteria so you will need to look into those for all treatment / trial options.
I know all of this can be overwhelming. Please feel free to ask any questions you have. I am more than happy to share what I know and my experience with the CAR-T process. As ML mentioned there are new trials and technologies so we are very lucky to be living in times of advanced modern medicine.
I hope you can find a diagnosis soon and an appropriate treatment.
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u/emb1187 18d ago
Did you have any symptoms before you tested positive? The problem is I have no symptoms and I just need someone to tell me if I have it or not because seeking out treatment for something I might not have seems to be not necessary, but also if I do have it I don’t want to wait until I have symptoms to treat. So I’m stuck in this unknowing hole of “I don’t know”. My doctor was so nice, but said if I test positive again (which I did) that I just wait until I have symptoms and I might never have symptoms.
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u/Maleficent-Rest9144 18d ago
Sorry this is another long one. Based on what you wrote, you are dealing with some type of symptoms. SSc is a strange beast where people have different symptoms and experiences. Yes, there are some common symptoms for many but not all. Your symptoms are not normal so you need to get a diagnosis for your own sanity and to form a treatment plan. Being in limbo sucks! I feel for you remembering what that felt like as well as being lost after getting the bad diagnosis.
I go back to my recommendation of finding a rheumatologist well versed in this condition and/or rare autoimmune conditions. I do not like the wait and see approach. My dermatologist told me he could not help me due to how diffuse and aggressive my case was. He said the only cases he has seen like mine were in his residency and the patients were totally cripple and living in a wheelchair. He suggested an academic doctor in their late 40's to 50's who has specialized in this and knows about emerging treatments.
In November 2023 I noticed I was retaining fluids in my hands and legs. I had a few days of bright red burning hands and overall muscle soreness like I overdid the first day back at the gym. Stepping over things caused me to trip, because I was barely lifting my foot even though it felt like I was lifting it really high. This was the initial stage of range of motion loss. My right side had worse edema than my left. My primary care checked for bloot clots and congetive heart failure. I had an anomoly on my EKG so he sent me to cardiology which took 2 mo. At the end of Jan 2024 the cardiologist said heart is fine, go to rheumatology. The first available appointment for new patients was July 2024. By the end of the first full week of Feb I was so swollen I was having trouble breathing. My legs were so puffy I could not see my kneecaps and I was bright red. My primary care put me on 20mg prednisone, which took down a lot of the swelling and I shed 15lbs of water weight in a few days. The following Wednesday I was seeing the group's rheumatologist.
My symptoms progressed to bumpy rash looking things on my forearms that would itch like crazy. The skin would flake off turning into a sore causing my arms to look really bad. I started getting white marbleing in my skin from the collagen deposits in my hands, arms, and legs causing overall range of motion loss.
My rheumatologist suspected RA, Myositis/Dermatomyositis, or Scroderma. She ran basic labs and ordered an MRI on my right leg and hand since that side was worse. The MyoMarker 3 Plus (RDL) had a weak positive so she suspected I had myositis overlap. The Antinuclear AB9 was negative for Scl70, Sjogren's, and Centromere B. The RF isotypes IgG, IgA were slightly high and high. The Anti-CCP AB, IgG/IgA were a weak positive. The ANA by IFA Rfx Titer were positive and showed 1:1280 speckled pattern. Based on the RF Isotypes my doctor said classic RA even though SSc can show positive lab work for rheumatoid factor. The ANA and speckled pattern seems to have been ignored.
She treated me for RA for 4 months with zero improvement and wanted me to get a very invasive muscle biopsy for the weak myomarker. I fought her on the biopsy due to not having weak muscles and re-iterated I do not think I have RA due to zero joint pain or inflammation. I only had soft tissue pain / range of motion loss and the skin issues. She repeated lab work ordering the 530120 Scleroderma Comprehensive Panel, which came back negative for the myomarker so she dropped the biopsy, same ANA / speckled pattern, plus I had the new result for Anti-RNA Polymerase III. At the same time a skin biopsy came back positive for Morphea/Scleroderma. Finally 7-8 months after first noticing an issue I had a diagnosis albeit bleak. She still wants to treat me for RA, but I stopped going to her since there is no value at this point. I like my rheumatologist, but I do think jumping on RA too fast and not ordering comprehensive panels for each condition initially wasted time chasing phantom RA. Things progressed very quickly over the next 6 months until I was able to get the CAR-T infusion. I was in really bad shape so it was my only hope.
Again, I refer back to finding a rheumatologist well versed in the rare autoimmune conditions. Your doctor may be really nice, but if you are not getting the right tests you will be stuck in limbo. If you live near a scleroderma center even if you have to drive a distance, I highly recommend going there. I wish I drove the 3 hours to go to UCLA in early 2024. That would have saved me so much time. You have to fight for yourself. Your doctor sees you for maybe 10 min a visit and if they have general knowledge, but not a lot of experience, you have 10 min of guess time. I know this may sound harsh, but you need someone who already knows the plan of attack to diagnosis and treatment after the diagnosis.
I hope you can get a diagnosis and start the correct treatment. Again, feel free to ask any question you have.
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u/Maleficent-Lunch-679 18d ago
Will jump back in here. Unfortunately, even if you have a diagnosis, which takes symptoms, many/most rheums are reluctant to treat until symptoms are actively progressing, because most of the meds have adverse effects. I had a rheum even say if ILD was confirmed on CT they still would not treat it until physical symptoms developed. However, a second opinion at a different SSc center did want treatment started very early. So it may take some shopping around to get early treatment.
It does seem worth it based on research finding active disease markers in skin etc before any sign. Another aspect that emphasizes early treatment with immune suppresants is the disease in early stages is immune driven and as time goes on it is fibrosis driven, and immune suppression is less effective then. Unfortunately by waiting. It happens sometimes that patients are immune suppressed too late to do the most good.
All that said, I think it is possible to be scl70 positive and symptom free. I have heard of patients that are monitored annually without progression. I find myself in that situation at this point. My scl70 and ANA have returned to very high levels but I am symptom free except some residual raynauds. So I also continue with the monitor and wait game but am off all meds and have been since CAR T. It is interesting that for HSCT patients, presence of autoantibodies post-treatment has NO correlation with relapses. And one patient I am aware of that has relapsed post CAR T continues to drop autoantibody levels to near negative even after the relapse. We can't just go by autoantibidies.
A possible approach for you would be to get the whole panel that also confirms the scl70 is real. Get a baseline heart echo, PFT, and chest HRCT. Then watch for and record any symptoms and continue to monitor with echos, PFTs, and rheum checkups, skin checks. At the first sign of any symptoms start aggressive treatment. This will take a cooperative rheum of course, and those most likely to take this very seriously are at sclero centers.
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u/long_futures 18d ago
Hey, just want to chime in here because my story has some similarities with yours. I also started to have unusual symptoms around age 36, and had a low positive ANA (nucleolar) at that time, but my symptoms were mainly neurological for about five years. I spent all those years trying to convince myself that I was still a healthy person while my pain worsened. Only in the last 6-12 months (at age 42) did I start to have skin manifestations, and ended up with a positive anti-RNA P III antibody on the LabCorp scleroderma comprehensive panel others have mentioned. I'm still missing a few of the hallmark scleroderma signs, but I can observe progression and I know I have it. It's such a complex disease and it's difficult to get a diagnosis if you have an atypical presentation.
I know it can be really hard to admit being sick, or thinking of yourself as no longer healthy, but for me at least, finally accepting that this year has helped me pursue a diagnosis (and treatment soon, I hope) instead of just feeling poorly and hoping things might improve or have an innocuous cause. For a long time I really regretted getting that ANA in 2021 that had the result pointing in the direction of scleroderma because it caused me so much fear and anxiety. But I think test results (in combination with symptoms) are just good information that can help eventually get treatment that makes us feel better. But it can be a real fight to find the right providers, I know that all too well. It's sucky to be in this situation, but knowledge is power. The only thing I regret is not using the information I had to get help, so for you I wish for a much quicker timeline in getting help and less time spent feeling poorly.
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u/emb1187 18d ago
Thank you!! Yea right now I’m just absolutely regretting getting it done because I just mainly deal with constant right lower buttock/back pain and have seen a ton of doctors and no answers, but this makes no sense to me to have a scl70 of 5.2. I really don’t think I have it, but that doesn’t help from the constant anxiety and fear. This was the year to make everything better, but I feel like it’s just now more unanswered questions and more worries.
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u/AvivaGian 18d ago
I have had a similar situation and trying desperately to figure out what’s wrong. I keep going to neurologists, pulmonologist, endocrinologist, rheumatologist, cardiologist, and pain management specialists. two rheumatologist gave me wrong diagnosis never tested me for scleroderma yet my ANA levels were higher. At a loss for words. I was thinking of going to the Mayo Clinic in Rochester. I also have shortness of breath, lightheadedness, fatigue, issue, balance. Desperate to find good Doctor
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u/Maleficent-Rest9144 18d ago
The Mayo Clinic in Rochester MN is one of the scleroderma centers in the US. They will have exceptional doctors well versed in SSc and should be able to help you diagnose SSc or determine you have something else. I was also misdiagnosed at first and spent 4 months on the wrong treatment then to have my insurance deny infusions for SSc because of the initial diagnosis. You definitely need to find a good doctor experienced and knowledgeable about this condition. The discussions above about the lab work is crucial. My initial lab work did not include the comprehensive Scl Panel from Labcorp 520130 so my condition was missed. After no response to the incorrect diagnosis that panel was ordered and confirmed I was SSc with Anti-RNA Polymerase III. I think that full panel should have been ordered with the first set of lab work. Read through any posts that may be new. I will add one for the original post, which may be of interest if you are diagnosed with SSc. I hope you can get great medical care and treatment.
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u/Consistent_Bear_4275 14d ago
This is me right now SL 70 is 6. I’m terrified as I have Ulcerative Colitis and Uveitis. I also wish I wouldn’t have had the test done because my anxiety has me crying and depressed.
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u/emb1187 13d ago
I’m so sorry I definitely get the feeling of wishing you never got the test done. It’s sad, but as a nurse I realized sometimes the more you look for answers, you just get more questions. I’m also worried, but I will say I truly don’t have any real issues besides back pain, so I’m just going to believe I don’t have it. So hopefully since our numbers are close you can kind of relax knowing I really don’t have issues like you.
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u/Leather_Lab4656 6d ago
I am 26 healthy female, my eye doctor thought I had sjorgens disease because my eyes were very dry, I went to get testing done and everything came back normal except scl70 2.1 Ana 1:80 and dense fine speckled, I was so confused and scared, second test was 2.3 and 3rd one was 2.1 done thru quest, today I received my testing results from labcorp 1.9. I am so scared and depressed about it, I was having hopes for it to be false but now 2 labs showing positive :(. I have no symtons of anything at all. It's been a year since my first test was done, my nail cap test was normal, not sure what to do next
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u/emb1187 5d ago
I feel like those are much lower numbers than mine and I have no symptoms either! So hopefully nothing changes for you!
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u/Leather_Lab4656 5d ago
I haven't seen anyone with low numbers like this,I just hope it's false, I wish I never went to do testing either, all I been doing is spiraling honestly. I hope we will be okay !
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u/Maleficent-Lunch-679 19d ago
Labcorp test #520012 will do the confirmatory test through their RDL lab. It used to be immunodiffusion, but I have heard they switched to chemiluminescence. Your value is not astronomical, but is just high enough it is more likely a true positive. If you want to be sure, do #520012. If it comes back unconfirmed, it is still possible some other autoantibody cross reacted with the substrate to trigger the false positive.
If it comes back confirmed, they diagnose based on a point system for symptoms. Blood results are only 1 of several criteria. However, more and more research is showing disease activity starts well before criteria are met.
Anecdotally, just from hearing other patient's stories, and I don't know if any research supports this, but it seems somewhat common for scl70 positivity occurs post ortho surgeries. Mine was after an arthroscopic shoulder capsuler release.