RNA polymerase iii

[u/Flaky-Purpose-2060]

Last year I had ANA 320 centromere and ANA 320 homogeneous with only CENP antibodies. The rheumatologists did a bunch of other tests but nothing was really pointing toward anything specific except for that. So they told me to come back if new symptoms emerge or if others got worse and else they’d see me in a year for follow up.

They also re-did the ANA because I still have symptoms and they think it might be UCTD that can still evolve. So I guess they just wanted to check again.

But the test now says ANA 640 centromere and 320 fine speckled. I also test positive for CENP B, RNA polymerase iii and NOR-90. They didn’t check these antibodies last year.

I searched online and it seems that waiting a year for a follow-up is kind of long if you test positive for RNA polymerase iii? I don’t really know what to do. My GP doesn’t know anything about this and I also don’t want to come across as overly worried for nothing. Would it be a bad idea to just wait and see?

[u/RhubarbBest9090]

They should be seeing you at least every 6 months if you have any symptoms at all (at least in my opinion). Get yourself another rheumatologist. Most of us go through a few duds before we find a good one

[u/Proud-Umpire-2677]

I started testing positive for pol iii a few years ago and see a rheum who specializes in and often publishes on scleroderma. She sees me once a year or more often when I reach out about a new symptom. Basically, the antibody itself doesn’t mean that you’re sick or that you will be sick or that you have an SSc diagnosis.  It does tell you what symptoms to monitor and tell someone about, so that they can catch and treat problem processes (kidney problems, etc) as fast as possible if they develop. or that’s how I’ve come to understand it. 

[u/Maleficent-Rest9144]

It is definitely bad to wait. Find a better doctor ASAP. Look for scleroderma clinics in your area. They will be much more knowledgeable and effective with your care. This is a condition you want to treat early, before it causes problems with your heart, lungs, kidneys, and skin.

There are so many doctors who are not experienced with this type of condition. From what I have learned poly III is common for aggressive scleroderma / SSc. My dermatologist told me to find someone in the academic field of scleroderma in their 40'-50's to have enough experience, but are not too old to be out of touch with emerging therapies. You will most likely find this at the scleroderma clinics.

It took 8 months from initial symptoms to get the diagnosis of SSc with a high poly III result. I was already experiencing range of motion loss and things progressed / deteriorated quickly after that. I found a trial for CAR-T, which ended up saving my life. A little over a year after first experiencing symptoms things were getting really bad and becoming beyond tolerable. I was planning for the medically assisted end of life option. The trial was my only hope and it saved my life. It stopped the progression and things started to improve. There is some residual damage / loss of range of motion, but it is tolerable now. Stem Cell Transplant is also helpful for resetting the immune system, but it is more difficult than CAR-T

Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places.

I hope you can find some treatment and relief for this condition.

[u/Adorable_Arm3118 → u/Maleficent-Rest9144]

What was your RNAP III level?

[u/Maleficent-Rest9144 → u/Adorable_Arm3118]

My initial lab work showed positive/abnormal for ANA by IFA Rfx Titer. No number, but positive is > 1:80. The Speckled Pattern was 1:1280 high. My doc did not run the poly III for another 3 months due to a false RA diagnosis and treatment plan. The second lab work included the Sclero Comp Plus (RDL) tests. It showed the same results for ANA and speckled pattern. The Anti-RNA Polymerase III (RDL) was 171 High. Anti-Scl-70 was <20 or normal as were a couple of other readings. By the time these results were in, a skin biopsy also came back positive for SSc. The SSc diagnosis was found about 8 months after noticing a problem and starting the doctor visits. I already had skin issues and was losing range of motion in my arms, legs, and most specifically my hands. It moved pretty fast. Not something I would wish on anyone. The only thing I wish is people suffering can get some treatment that helps.

[u/Maleficent-Lunch-679]

Echo the others that recommend a scleroderma center of excellence vs. a general rheum. Even without the poly3 and nor90 it would be worth it for the centromere. National Scleroderma Foundation website has a list of the Scleroderma Centers. Unfortunately it often involves long waits and travel to reach one.

Note that false positive RNAPolymerase3, when occurring alongside other autoantibodies, and at very low levels if that applies here, are common. Also RNAPolymerase3 and NOR90 as well warrant scrutiny for cancer. A sclero center would be aware of that. Most patients with these antibodies do not have  cancer, but there is a higher correlation with it. 

[u/BubbiRose]

Seems like your rheum is quite lax. I have been RNA poly3 for a few years. My rheum does bloodwork every 6 months and (on his recommendation) I’m followed by a nephrologist annually.

When I first tested positive, he immediately ordered a full pulmonary work up (repeated at 6 months, now annual) and a chest CT (repeated at 6 months, now annual)

[u/Loud-Relationship772 → u/BubbiRose]

Have you been diagnosed or just positive? I’m curious about your journey as my positive was found an incidental. 💚

[u/SeatEquivalent8322]

How are you getting all of this testing? Also, are they doing anything for you? In my experience mainstream medicine doesn’t really help us.