Confused about RF and anti CCP antibody level

Nickicoley

hi all, I'm relitively new to this world , and somehow stumbled into a diagnosis of Palindromic Rheumatism, possibly RA quite out of the blue. I'd Iike to ask if anybody can answer a question I don't seem to be able to get an answer for even from consultant/nurses, I just get a very general brush off answer. My RF result was 237 and CCP 331. I know these are above normal, which is the answer I get from the hospital. To me they seem scarily high, but in the realms of RA are these as high as they seem or are they relatively low, and also is there a correlation between the value and how bad it could get???

It may seem a trivial question but it would ease a bit of anxiety that I'm getting over the diagnosis, more because I have no idea of the answer and where this new journey I find myself on could be leading.

thankyou for your time and any advice appreciated 🙂

Arthuritis

@Nickicoley First… DON’T PANIC!

So first on your RF & ACCP - I was diagnosed in 2021, and my RF & ACCP numbers maxed out the private & NHS ACCP numbers. The ACCP is more definitive, mine was over 500! What that indicates is how violently worked up your immune system is about whatever triggered it against your joints. RF is not definitive and not the best indicator as the more modern ACCP.

A very high ACCP means your prospects of remission are not great, and the ease with which a flare can trigger, and the high ACCP means how painful the flare can be if triggered.

Now despite this, I managed to get into remission symptom free, drug free for 2 years, after 1 year of max MTX of 25mg/week. I also discovered that certain foods (proteins) triggered my flares. 2 years of avoidance dropped my ACCP slightly, sadly my biggest trigger is soya, and soya lecithins (not found in your kitchen ingredients, only food factories). Unfortunately I became blasé having been off the RA club drug & symptom and drug free, thinking it was in my past. In January this year I ate something containing soya protein and it triggered a massive flare bringing back all the RA war memories. I am now slowly on my road back to drug free & symptom free remission, not fully there, but I am largely pain free without MTX by being super vigilant about avoiding eating anything that triggers my immune response. This is unique to each individual but soya is so common it’s even listed as an allergen.

Research at Stanford University Medicine shows diet has a lot to do with this.

Here are some links to follow up on, come back after you have had a look with your questions:

https://podcasts.apple.com/gb/podcast/zoe-science-nutrition/id1611216298?i=1000696532853

leaky gut UCL research

https://www.ucl.ac.uk/news/2021/sep/targeting-gut-relieve-rheumatoid-arthritis

sfed

https://londoncfm.co.uk/what-is-the-aip-diet-autoimmune-protocol-diet/

The important thing is not to panic or stress. For many people who are willing to change their diet and educate themselves, there may be an exit ie symptom & drug free, but early on your main objective should be to take your meds and bring your damaging inflammation down.

Your diet plays a big part, but you won’t know how until you educate yourself a bit. 

Here’s some good info to help you understand your condition and what:

ZOE

blob:https://community.versusarthritis.org/4eca8644-9978-4916-a437-c7acce69535f

How to reverse arthritis in 8 weeks | Dr. Tamiko Katsumoto

Arthuritis

CORRECTION… I tried editing my post but it wouldn’t work, so here’s my edit:

A very high ACCP means your prospects of remission are not great, and the ease with which a flare can trigger, and the high ACCP means how painful the flare can be if triggered.

Edit:

A very high ACCP means your prospects of DRUG FREE SYMPTOM FREE remission are not great, (BUT NOT IMPOSSIBLE - see my story and others like me that confound Professors of Rheumatology!) and the ease with which a flare can trigger, and the high ACCP means how painful the flare can be if triggered.

Nickicoley