RNA polymerase iii positive question

[kristin89]

Hi everyone.

I am 34 years old and have had raynauds since I was 18. I had a positive RNA polymerase iii test 5 years ago and again this year. I do not have any other symptoms. My doctor has me come back every year to do testing. At this point, I feel like I am just waiting to get scleroderma. I always wanted to have kids but now don't think I should if that will be my outcome.

Have any of your had a positive RNA poly 3 test and never developed it?

[Midgebite21]

Hi, sorry you are feeling so concerned but can I ask if this is your only antibody? My rheumatologist advised me years ago that diagnosis isn’t made on antibodies alone (and certainly not just 1 isolated one) but on symptoms and combinations of symptoms and antibody profiles also. It is totally possible for people to have numerous antibodies that never go onto develop disease itself. The immune system is a very complex thing. If you are symptom free and have been for over 5 years hopefully this bodes well that you won’t now.

If you are putting off starting a family over 1 antibody and no symptoms then I would say please talk to your rheumatologist and clarify what it is they think is likely to occur especially if you have been tested annually for 5 years with what seems like no progress.

[kristin89 in reply to Midgebite21]

thank you for your reply. I’ve had Raynauds since I was a kid but that’s it hasn’t gotten worse. Reading about the poly3 positivity test and what it could mean has me worried. They type of scleraderma is said to be the worst kind. My doctor is having me come in every year for all the testing. I’ve read it had a rapid onset so I guess I have anxiety that it could show up any day now.

[Jaq1971 in reply to kristin89]

hey

So I have systemic sine sclerosis and only became symptomatic two years ago I also had raynaulds from a young age but I have treatment that help me I have two children and adopted my third child who is 8 do I regret having them nope life is for living and if you want children you should have them . Anything could happen in the future not even related to scleroderma so dont live with what could have been live for now my kids are my best achievement and I also have two grandchildren hope this helps xxxxxxxxx

[OldTed60]

I think worrying about an antibody despite no symptoms other than Raynaud’s is understandable but ultimately, futile. We all will get stuff wrong over time and you are at least being monitored annually which really should lighten the load a lot.

Worrying is more likely to ruin your health and quality of life than any disease as I know only too well. I’m a worrier - but am thankful to have never heard of any of these autoimmune conditions until I was diagnosed with my second one in my late 40s, with onset of menopause. In retrospect I can see how that I’ve always had autoimmune and genetic issues but no one explained this until I turned 48 and woke up to severe pain one day - unable to hold anything or navigate the stairs. My Raynaud’s started at same time which apparently is a lot more of an indicator but antibody (usually for severe end diffuse but I have limited) only showed up 3 years ago.

I’m so glad I didn’t know that I even was already an autoimmuner until then as it would have been like that Beckett play, Waiting for Godot. I’ve learnt that worrying about what may or may never happen health-wise is kind of like forgetting to live or spending your life watching paint dry. I understand and sympathise with the worrying of course but I SO wouldn’t be without my young adult children now for all the world 😍

So go ahead, have kids and try to seize the day if you possibly can. Yesterday’s been and don’t start thinking about tomorrow and all that Fleetwood Mac lyrics blah! x