Widespread Body Pain and High ANA

Hello — I wanted to add a few additional facts to my story above. I am HLAB27 positive. I have not been diagnosed with any illnesses that are more common with those carry the HLAB27 gene. I did have one episode of uveitis in 2018 (inflammation of the eye) that was treated with drops to suppress inflammation). I have not had any other episodes of uveitis.

Ok — I am new here and can see my first post did not upload properly

hs-CRP is

CRP and ESR and very low and normal.

@amykcpa. the pain sounds awful. I’m not a medical professional (no one here is) so I’m unable to understand your lab values. Your symptoms suggest that you need a rheumatologist, especially one who knows autoimmune disorders. Your best bet is to find one at a comprehensive medical center or university medical center.
Do you have one near you?

Becky — Yes, I have access to excellent healthcare here in Cleveland. We have University Hospital and Cleveland Clinic. I have sent my internist a note through My Chart. I expect her to respond soon with further guidance.

Thanks for your help.

I have had an ANA as high as 1:5120 (speckled) over the last 20 years. Systemic lupus diagnosis on my chart but doc and I have never been sure. Recently I felt sicker and my PCP broke the ANA down in an "ANA reflex panel" with specific antibodies and lo and behold, high positive for scleroderma. My rheumatologist never ordered that panel!

Maybe you can request the panel of antibody tests for more information.

They will tell you that you can have 1:320 and not have an autoimmune disorder. But it seems like the ANA plus your pain symptoms suggest something is going on and I hope you can get in to see a rheumatologist.

I have been doing massage at PT- my PT is really good at it. She also uses ultrasound. Lidocaine injections made me worse. I can no longer take NSAIDS because of my kidneys but for years flurbiprofen helped, sometimes along with low dose methylprednisolone. I use BioFreeze and Ben Gay a lot. Good luck!

You should be able to edit your comment, at least until soneone replies. Just click the three dots to the lower right of that. Cheers.

Just want to add that I have never cared about labels. Insurance companies need them. I do focus on what the treatment is and for many autoimmune issues and joint pain, Plaquenil (hydroxychloroquine) seems to be prescribed initially. That was just suggested to me but I need to see a cardiologist because my QT interval is longish and Plaquenil makes it worse.

Once we see one doctor they seem to multiply! I just hope they talk to each other because the needs of one specialty seems to conflict with another!

windyshores —Thanks for your response and support. Your story is helpful — this information will help me be more inquisitive as I navigate through this health issue. I sent a message to my internist through MyChart. She is assisting me with scheduling an appointment with a Rheumatologist. I will report back when I have more information.

windyshores — I do not have any swelling or any other symptoms other than tinnitus that started in 2021. Just wondering, based on my limited information right now, whether you think I would be required to take Plaquenil or another DMARD at this point - I am not liking the side effects I am reading about the drugs and would like to delay starting these types of drugs for some time if I am not damaging my body. During the worst point of my pain flares I would rate it a 2-3 on a scale of 10. I do not take any drugs for the pain flares. I had a pain flare 5 years ago that lasted 8 weeks. At that time CRP, ESR and ANA were normal. The difference this time around is that ANA is high. I tried Tylenol and Alleve for the pain 5 years ago but did not notice any difference in the pain level. The pain is worse when sitting at my desk and is relieved by walking around or laying down. The pain has never been so horrible so this time around I did not try any Tylenol or Alleve — just worked through it by sitting at my desk for shorter periods of time and meditating at night.