Anti ccp levels

[behappy1]

is 127 anti ccp considered very high or not too bad? Anyone have a positive anti ccp which managed to turn negative? I'm in excruciating pain at the mo as in a flair post pregnancy.

[helixhelix]

Anything above 20 is considered as a positive, but I've know people who had readings well over 300 so I guess yours is pretty much middling. But I don't know how much of a straight line correlation there is between initial anti-CCP readings and the severity of the disease. Some people are lucky enough to be picked up fairly early, with low'ish Anti-CCP &/or Rf results and go on to have quite aggressive, nasty RA.

I do know these readings can change over time, but since their main use is in the initial diagnosis I'm not sure it really matters what happens later. Mine have never been tested again and I was diagnosed years ago. But an interesting question that I'll ask my rheumy as if they drop & therefore you have fewer antibodies then maybe that's a sign that disease is fizzling out? would be nice to hope!

Sorry you're laid low with a flare - it does often seem to happen post pregnancy sadly just when you need energy to cope with new little one. But hope you're not letting it spoil excitement of new baby.

[behappy1]

Thanks so much helix helix, I've had pain and fatigue on and off for about 10-12 years. But now it seems to be constant. I've only this week joined this forum Im in the worst pain so far and worried. hoping it clears up & trying to enjoy the baby but struggling to look after him as I cant carry him, but feet kill and so do wrists.

You mention disease dying out? What does that mean? Can it disappear altogether and go away???

Thanks so much for replying & happy new year x

[IainM]

Hi behappy I've been having a terrible time since mid to end of September, thankfully slowly on the mend now due to hange of meds, my last ccp reading which I got on Christmas Eve at my Rheumy appointment from bloods taken the week before was 364, this only the second time it has been taken in just over 2 years, the first being when I was diagnosed and it was also 127 which was their diagnosis of Sero Positive RD, unfortunately my disease is now very aggressive and can be a nasty bugger at times, I really hope your flare passes quickly for you x

[behappy1]

Hello Iain, sorry to hear you've been having a rough time too. It is an unpleasant disease which I hope they will be able to cure one day . What meds you on now? I'm usually on Plaquenil & methotrexate. I also take steriods as I have addisions disease. I'm currently on nothing as need to take Antibiotics for 6 months because of latent TB. No idea where that came from. X

[Claire32]

Hi! When i was diagnosed, which was 3 months after my little girl was born my anti ccp test was 400. (I was in a terrible flare at the time and was pretty much immobile) A year later and on treatment, this was re tested as i moved hospitals and it was 195. I did lots of research online as to the reason for this, but didn't find anything conclusive.

I really hope your flare settles down. I know how hard it is with a baby, i hope you have lots of support and can get some rest. I was always told by the specialist nurses and drs that the further away i moved from the birth the better i would be.

Take care Claire x

[behappy1]

Aww thanks Claire. I have been retested and should get results tomorrow as the 127 was jan 14 and I wasn't feeling so bad back then. I have been a heap since birth. Barely left the house in 4 months. Husband was resentful initially but more help now. He's employed a nanny for 7-11 which the worst part so hopefully we won't need her too long. My body has deteriorated beyond belief. Bag of jelly & stretch marks. Lost of muscle bulk and have no calves! Xx