Saw consultant today - he thinks not RA but episodic inflammatory arthritis....

[Helzbells]

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.

[Hidden]

I guess that’s good news!

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.

It works.

[spzgirl51]

Hello Helzbells ,

I'm so glad you are getting some sensible answers at last.you must be so re!ieved?

[allanah]

Yeah

Good I think ! Hopefully the pain and stiffness will move! Did u ask about physio help. Let's hope it's a one off thing that will sort xxx

[Helzbells in reply to allanah]

Yes I'm seeing the physio though so far she's been utterly useless

[Cornishrex in reply to Helzbells]

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)

[Tizzyliz67]

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.

[Helzbells in reply to Tizzyliz67]

Consultant says it will go one of two ways. Either I will get better or in a year I will be back lit up like a Christmas tree with full blown RA

[Hobbits in reply to Tizzyliz67]

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.

[Cornishrex]

"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.

[Helzbells in reply to Cornishrex]

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.

[fusedesigns]

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