Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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RF and CCP numbers down

Mari31
Mari31
I was diagnosed with RA about a year ago. The Rheumatologist started me on mtx but after 10 weeks I went off of it bc of the negative side effects. I tried diet and it seemed to work for about 6 months. Skipped Dr. Appointments but after a bad flare decided I should go back to see the rheum. She agreed to let me try plauquenil. Initially pain got worse but after about 6 weeks everything improved. Initially numbers were RF 99 and CCP 86. Rheum did labs again and after a year RF 70 and CCP 67. The Rheum said drop in RF was not significant. She has been trying to reach me regarding CCP results even calling me personally from home. I have not been able to discuss it with her yet but received a call from her MA asking when is a good time for her to call me. Originally scheduled appointment 3 months out but she wants to see me sooner.

So I know that is a lot of info. I just don't understand the urgency. I am doing better and seems since the numbers went down that is a good sign. Any Insight? Afraid she will want to put me on a biologic and not ready for that.
lady3jane
lady3jane
RA factor is not a reliable indicator of disease activity. Not sure about anti-CCp, since mine is always negative. What are your C-reactive protein (CCP) and sed rate? Those are important.
leahdh
leahdh
You are probably right in that she wants you to start a biologic.

You're still in the higher (strong positive >60) Anti-CCP range while on Plaquenil. Research I've read says the higher numbers = more aggressive disease and more 'systemic' involvement.

...and She doesn't want you to miss appointments (o:
Mari31
Mari31
I have always had normal CRP and sed rate. My RA has given me few problems in the last year. The only thing to indicate aggressive disease are the CCP numbers. I have read the research. Seems like if Plaquenil is working well at this point that should be enough. Still have not talked to Rheum so we will see what she has to say. Thank you lady3jane and Leah for your responses.
bcatz
bcatz
It's very possible you felt better for those 6mo after the Methotrexate because (even though you had side effects) it worked and finally disappeared over the course of time. The plaquenil is working but only a little based on your bloodwork.
The way to prevent future damage is to impact the RA early. I'm sure your doctor wants to get you on an additional dmard or a biologic drug. My remission lasted 2 1/2 years and I'm about to face the piper and have to start a drug. I don't know if it will be plaquenil or Enbrel. Enbrel was amazing for me even though I only took it for a few months. Methotrexate messed up my body.
What are your sed rate and c reactive protein? Those are markers for inflammation. And have you had xrays or mri of the hands and feet? Those would be important right now.
Mari31
Mari31
Inflammation markers always normal. I did have xrays on hands and feet and MRI on hand last year. It showed inflammation but no erosion.
bcatz
bcatz
did you see all the blood work done? Maybe something else was abnormal? Liver enzymes? white blood cell count?

Maybe you are the perfect profile for a clinical trial?

I wish you all the best!
Trooper45yrs
Trooper45yrs
If you are miserable, try a biologic. They are no big deal for most of us and can really help. Humira worked for me for over a year... made me feel almost "normal" again.