Hello all.
I recieved my formal diagnosis of RA last week and trying to learn as much as I can.
I often see you all discuss blood results/ CCP levels and wondered if someone coukd give me a beginners guide to understanding how yo interpret and what it all means.
My letter says
CCP positive 157, Rheumatoid Factor 37
I just jont know if this is high/low good/bad. What should it be?
Thanks in advance
welcome to the group none really wants to join. You’ll find lots of people recently diagnosed here, I hope you find it useful.
NRAS do lots of useful publications to download or order copies of. A couple you might find a help are
nras.org.uk/product/blood-m...
They also have a helpline.
Feel free to ask whatever you want, there’s a wealth of experience here to support you.
Thank you I have ordered
CCP test is actually better at detecting RA than the RF factor test , normally it's 20 units / per ml is considered elevated,so with bloods and das ( disease activity score ) hopefully they will get you on meds very soon . Also RF factor rates again 20 is considered elevated
Thank you
what sypmptons did you have?
Started with swollen and painful fingers, painful wrists that would come and go.On one occasion I couldn't straighten my fingers.
On reflection have felt more tired and lacked energy but I put that down to getting older and been busy.
sounds ike mine, do you know what medication they paln to give you?
Methotrexate
only tht? how many mg?
Don't know yet, all very new.
Mtx is the standard initial medication. They may add others after a while. My (rather a long time ago) initial experience was that mtx did help more than i realised at the time, then they added a biologic infusion, but one step at a time. Mtx can. upset stomach in some people but it does help especially if you follow the recommendations - and usually to have regular folic acid. But we cant replace your qualified medical team, just share our experiences. `hope you are ok.
Hello and welcome. In the very early days my first reaction was panic. I had seen some people with awful deformities, which frightened me silly. Didn't know any anything about this condition and didn't know what I didn't know. It gets better. This forum taught me so much in tiny daily increments that, eventually, it all started making sense. May I suggest looking at the NRAS site, please don't Google, relax as much as you can and visit here. Yes, these forums tend to be peopled with scared newbies like yourself and those who are struggling but there is also a wealth of knowledge and experience which will be useful. Wishing you well
Thank you for the support. I'm actually feeling OK about things atm. Actually getting a diagnosis was like having a weight lift and has validated the pain/discomfort I was feeling.
I'm fortunate that looks like caught early and no joint damage (yet) and i know from discussions/reading that modern day meds can make a big difference.
I epukd however like to understand more about test results and what they mean, but am sure I'll learn quickly.
Im looking forward to getting back to myself
Learning is good but Dr Google can be bad. Remember bad news sells newspapers quicker than good and stay positive. I felt like you did relieved it was a treatable condition and it was a blip but to be honest didn’t change my life much. I continued to have a good career, bring up a family, travel, and do all the normal stuff we humans enjoy. It’s not like that for all but my employer never had any issues and I doubt any of my friends I didn’t tell, ever knew I’d got RA. It’s been a long time now but I’ve never really done more than do the usual blood tests, hospital visits and take the meds or jab it in. I’ve rarely had any problematic reactions although it’s worth remembering none of them work fast unlike antibiotics. I have a lovely RA specialist nurse a nice Consultant and regular check ups. I have volunteered to go phone call to save the trip to clinic but because of severe disease it’s a no. I don’t think looking at me anyone would notice anything, all I have is a tiny swelling over right knuckle. Remission is the target and hopefully you’ll get there soon. If you do unluckily get side effects that don't resolve or the meds aren’t working well after 10/12 weeks then it’s vital to let your team know so a change can be made. I have other medical issues but RA is not a problem and hasn’t been for many years. As said before look up the NRAS website to get accurate information but travel this long journey with hope as negativity is depressing before your even half way to remission. Patience is needed and staying active is always good. I wish you well and enjoy your life. I’ve walked up Snowden with RA, rambled and danced it really never was an issue once remission is achieved. Xx
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