There seems to be no relationship between the amount of RNP and severity of disease! My first rheumy never even tested me after the first time. The one I have now, does do it occasionally. Not everyone gets this really bad. I have had signs for 63 years and had only a couple of bad episodes where I was medicated. Yes, I have symptoms, but they havent killed me yet! Take heart. If you are doing well, you may keep doing well! I too am terrified of those things, but havent gotten them yet!
Mary Ann

Do you take medications now? What do they define your crossovers as? I went back and looked at bloodwork from years back and the only one other than the rnp is another marker for lupus that’s not high but in the high side of normal. I have two negative ana’s Done by IFA. I just need a rheumy that understands this. She told me not to come back unless I had symptoms.. but everything I read said I need baseline lung functioning tests and such.. I have shortness of breath at times but I have bad allergies and I am overweight so I attributed it to that. Now I am
Just scared that all these weird things I have marked off as she are actually something else.

How old were you when you were diagnosed and what age are you now if you don’t mine me asking.

I take no meds for MCTD right now. In the past I have taken Plaquenil, Medrol, Celebrex. and meloxacam. I have had elevated ANAs off and on since the first time it was checked at about age 30, but I had symptoms since I was a baby. I was diagnosed with a "smoldering connective tissue disease at age 30, but was not diagnosed with MCTD until I was 53 when someone bothered to run a RNP as well. I did not have a baseline lung function study after diagnosis, but was tested due to allergies when I thought I had asthma. My rheumys have both thought I was developing Lupus and that would be my final diagnosis. Right now, for some reason, I am supposed to have undifferentiated connective tissue disease. I am now 65. Right now, my rheumy does not think the rashes I have and the joint pain are not related to MCTD. He thinks the joint pain is osteoarthritis. The list of rashes grows. 2 of these can be associated with arteritis which is autoimmune, so I dont know where he gets that it is not autoimmune in nature!
I wish you luck on your journey! You will find it takes awhile to come to grips with this. My advice is to continue to enjoy your life while you are alive and not worry too much about how long that will be. Who would have thought, when I almost died at 15 months from kidney failure, that I would be alive at 65 and still doing new things every day!
Mary Ann

Thank you so much. I am trying to relax. It’s jist all overwhelming. I broke out in hives or something today which I’ve never had.. so I am reading about changing my diet and just trying to take control of what I can. My mom has something and my great grandmother had lupus .. my dad has all sorts of issues too.. I appreciate your words of advice.

Have you read anything about the antibiotic protocol? Or Low dose naltrexone?

I wanted to ask my dr if it was ok to try this before any harsh drugs..

I completely agree with everything MT said-- strongly vs. mildly elevated anti-RNP makes no difference, your symptoms may not progress at all, and MT's symptoms are definitely related to MCTD. It may make her rheumatologist feel better to think it's something else, or check some box that satisfies some junkware electronic medical record big data bullshit, but diagnosing her with UCTD is senseless.

I would not screw around with antibiotics, naltrexone, or any drugs typically used for immune disorders. There is no preventive treatment for immune disorders other than just maintaining good health-- eat right, exercise, don't drink or only in great moderation, don't smoke anything.

I have found that medical grade CBD oil with small amounts of THC is very helpful, but my symptoms are quite debilitating in the morning and late afternoon. (I'm 60, still work full time, very active with sports and music, but have pretty poor endurance and I need to sleep a fair amount during the day. Narcotics are useful for more severe pain. I wouldn't bother with CBD or opiates if you're not in serious pain, the CBD is expensive and opiates can be dangerous unless you're really at low risk for addiction and extremely disciplined about how you take them.

One or two people in this group had some luck with the antibiotic therapy several years ago. I am very skeptical about LDN therapy-- just haven't met anyone who had any luck with it.

Welcome to the group, feel free to check back and let us know how you are doing!

I recently found this post and thought I'd follow up to see how you're doing. Your (and MToennis) situation sounds like mine. Hopefully you're monitoring this and will read it.

My PCP recently saw a high ANA on some blood work. Another draw found a elevated RNP at 1.5 AI. I was referred to a rheumo who saw some edema on my ankles that one lab result, and immediately put me on prednisone and hydroxychlorq. Not even trying to fix things with diet or supplementation, or other less drastic means.

I went to my PCP for night sweats to make sure it wasn't lymphoma (a high risk in my profession). I'm not overweight and am an obstacle course racing athlete. I lost a lot of weight due to an alcohol abuse med (Naltrexone 50mg) because it suppressed my appetite. But I kept training hard through not eating, and dropped 10 lbs in 2 months. The suspicion is my body was breaking down muscle for fuel and it threw my kidneys (and everything else) into a fit. I'm still seeking other opinions and am awaiting a CT scan and 1 more blood/urine test.