Anti-CCP antibody blood tests ("strongly positive" at... - NRAS

NRAS
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Anti-CCP antibody blood tests ("strongly positive" at 223): If you are in the same boat, what is the prognosis/your experience of RA?

Zena
Zena

I am on Plaquenil (Hydroxychloroquine) - is this going to do the trick? How long for?

It seems to have controlled the Palindromic Rheumatism (acute attacks) but joints and tendons are behaving strangely 4 months down the road after commencing on this drug.

(My Rh Factor is also positive)

15 Replies
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Hidden
Hidden

hmm Iwas at hydrotherapy today after work spoke to two ladies doing well on hydroxchloroquine.. but dont know if they are positive. factor!.. cant really ask that in a pool??. now with your reading being so positive.. you are much more likey to be considered for ant tnf treatment.. prognosis is v individual and the two ladies i met seemed quite well...

Thanks Summer, I will bear this in mind to ask next time I see the Rheumy.

Hidden
Hidden

Hi Zena

Anti- CP is a diagnostic marker for RA. People with a positive anti-CCP will tend to have a higher potential for erosions and joint damage if the disease is left untreated than people without a positive anti-CCP. A higher positive does not necessarily correlate to a worse outcome (i.e. someone with a level of 100 does not necessarily have twice the disease activity and erosions of someone with a level of 50). The anti-CCP does not give any indication of disease activity. Changes in the levels are not correlated with anything. The main objective of RA treatment is simple – control joint inflammation, avoid damage.

223 is strongly positive for anti-CCP but not especially high. My recent one was 776 and someone on HU had a result of 1200.

Everyone's different when it comes to disease progression and suitability of drugs. Hydroxychloroquine has been around a long time and is well tried and tested. See how it goes ... there's plenty more options, including combi therapy if this one doesn't help. Good luck,

Lyn :)

Hidden
Hidden
in reply to Hidden

Hi Lyn

Hope you ok.

Just dug out a letter from my consultant which reads that I have strongly positive ANA at 1: 2560. Any idea of the ranges for this one and /or clinical significance? Hope you see this or I may message you

fi xxx

Hidden
Hidden

Hi, lol, I am the lucky someone with the 1200 result!

I had a complete meltdown when I found this out but with Lyns help and advice I soon realised I wasn't about to spontaneously internally combust :)

I look at it as a postive now, there is no doubt that it is RA and am being treated aggresively started taking 3 dmard's at once straight away, although I am now on Enbrel and MTX. I was only diagnosed in Feb this year after my first flare in Jan.

From what I've read on this site and the difference in blood results I am in no way 'worse' as a result of a high reading, I don't think I have any permanent damage yet and I would say the RA is on it's way to being very much under control.

Plaquenil was one of them, didn't really work but thankfully no horrid side effects.

Zena
Zena
in reply to Hidden

Many thanks for your feedback, all info welcome

wow..some high readings...mine was only 68 but have damage to my hands and feet already..only 10 months into diagnosis and already starting anti tnf. (Damage occured prior to diagnosis) my consultant is attacking aggressively based on the clinical picture which scared me initially but I can't afford anymore joint damage so just going with it now. Good luck x

Hidden
Hidden

Summer - I do think you are jumping the gun here. You say "now with your reading being so positive.. you are much more likey to be considered for ant tnf treatment" I wonder if you could tell me where you sourced this info? If someone has been on Hydxy only for four months, NICE recommendations are that other DMARDS are added into the mix. It is only when they have also failed that you are put forward for anti-tnf's, and then there asre very strict criteria - DAS scores etc to be taken into consideration.

i dont really understand all this much but had a ana of 1/80 and so the dr said i was fine . had ultra sound and have erosions all over my hands and been put on hydroxychloroquine and methotrexate . also he said i have the malar rash on face but wont diagnose lupus ??????? anyone have any ideads

I know these posts are old but I'm hoping that someone still follows. I am a 38 year old male. I started getting fevers with a headache starting May 22, a Friday. The following Tuesday I went to the hospital and was admitted for 5 days. Spinal taps, mris. You name it. They did it. The only conclusion was my liver levels were through the roof some other funky things here and there, "you have a severe viral infection that will run its course". After two weeks I am still sick. Now I have an itchy rash. My primary ordered more blood work. Liver functions improving but my GGT level is 1108, my rf number is 7 but my ccp antibody test was >250.

Does anyone have any input? Do I have RA? I'm really nervous. Nobody has answers.

mca627
mca627
in reply to MattfromNY

I have RA and my ccp is also over 250. You definitely need to see a rheumatologist. Your time in the hospital sounds exactly like an RA flare. Flu like symptoms, achy joints, etc....Best of luck to you..I also spent two weeks in the hosp prior to my diagnosis and luck there getting anything resolved it was only after getting to an RA Dr. that I began to get better..:)

munchybunch
munchybunch
in reply to mca627

That’s really encouraging. My ccp is at 425! I’ve just had my first flare up and been diagnosed. I’m so scared that the higher number means you get it worse. Does treating it early make a difference do you think?? Guess I’m just terrified!! I’m not in Methetrexate yet but I ll start that after my holidays. Any help/ advice pls?? Thanks

Zena
Zena
in reply to munchybunch

Hello munchybunch

I'm no expert on how the figures of the AntiCCP affect us but on a positive note, I can tell you that 7 years on, my flares are under control and I am very lucky that I am fit and can play tennis several times a week.

If I do get any signs of a flare I take Prednisone for 2-3 days and it goes away.

I started off on Hydroxychloroquine which worked except that I started getting rashes. I had already introduced Methotrexate too so the hospital told me to drop the Hydrox and just take the MTX. I've been on MTX now for 6 years - 15 mg - and so far so good.

It is very frightening at first but the drugs have certainly worked for me. I hope they do for you too.

I do also take Omega3, Opti-Turmeric and Starflower Oil capsules plus a few other supplements. I can't say definitively what is working but so far so good.

All the best.

Zena

munchybunch
munchybunch
in reply to Zena

Thanks so much Zena. I’m so scared that I think that could bring another flare! Do u react to the meds at all? Thanks sooo much for replying. Do u get fatigue at all??

Hi Mb

No I’ve not had any side effects that I can pin on MTX though I do occasionally get rashes but maybe not connected at all.

Stress can certainly cause fatigue so it may be that.

It’s a vicious circle - if you can get out in the fresh air and exercise all you can this feeds the blood and gives you energy.

My RA was caused by an inhalation of a garden Rose spray which I accidentally inhaled. (Contained Bifenthrin). There is no doubt in my mind as I had lung problems first. I worked hard to clear the lungs by exercise and healthy eating but then my diagnosis is Palindromic Rheumatism/Arthritis which is intermittent but excruciating but became virtually unrelenting until I went on Dmards.

Good luck to you and hopefully the Dmards will work for you too.

Zena 🍀🍀🍀

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