So my anti-ccp the thing that clinched my diagnosis of RA has...returned to normal without treatment.
I have horrendous pain and stiffness in my hands and knees but no inflammation on ultrasound, yet I can't kneel down or open jars etc.
The consultant thinks I've had an episode of inflammatory artthritis that has gone but has left the pain and stiffness.
He has said I need to triple my dose of gabapentin and carry on with the pain killers.
I thought the anti-ccp was a clincher but apparently they are realizing now they don't quite understand it and it isn't the fail safe for RA they thought it was although I am unusual as mine has returned to normal without intervention.
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Helzbells
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When they got my pain and inflammation down, I found I was suffering a lot of stiffness etc still, too.
Celocoxib and Omeprazole were prescribed but after thoroughly researching alternatives, whose efficacy was proven via studies, I have used Boswellia and turmeric curcumin daily.
Im seeing a physio privately. I saw the NHS physio for a while and she was completely useless. The private physio is a completely different kettle of fish and is helping alot. It might be worth considering paying for a private one.
Consider rosehip too. And chondroitin 800mg minimum (says my holistically bent GP)
I have had RA for 9 years and this year it is finally showing in blood work. I have always been negative in every test. I hope this isn’t the case for you but it is possible. They thought I had a short bout that would go away after taking prednisone for two weeks but it wasn’t the case. I wish you well.
Yes, very possible. Without a proper diagnosis it’s also hard to get the correct meds. I find when I’m not flaring all my inflammatory levels are perfect, and it can appear that I have no health issues, but when I’m massively flaring those levels go up a bit, not huge numbers like some others do, the ganglion cysts pop up during a flare. Yet I have positive RA factor and bone erosions. Seems to be a tricky disease and very different for everyone.
"apparently they are realizing now they don't quite understand it and it isn't the fail safe for RA they thought it was although I am unusual as mine has returned to normal without intervention"
Did the rheumatologist actually say that to you? I have always suspected that there is alot more (or less, as the case may be) potentially going on behind a positive anti ccp reading than the medical community yet understand (since I was diagnosed with RA based very largely on positive anti ccp, which I continue to contest), and I try to follow medical news updates on it, but I haven't seen any statement quite as strong as that above yet.
Hiya yep that's exactly what he said. He's a good consultant and honest. He says the only thing they know about RA is they don't understand it..
I was also seen at Bristol and they told me that it wouldn't matter how high my anti-ccp test was if I didn't have inflammation I didn't have RA. They also said they now don't see it as a definite for RA.
I requested my anti-ccp be done again as I didn't feel I had RA and my consultant agreed to do it.
I have had a similar experience but your rheumy sounds more useful- mine just decided to label me with fibromyalgia instead! She decided the drugs were working ( even though they were ruining my life!) even though I had pain stiffness and swelling....and just wanted to give me more for the fibro. I am just not convinced about any of it so nice to hear of a rheumy that at least questions!!! Good luck xx
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