Diagnosis Confirmed - Quick Question !! : I was... - NRAS

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Diagnosis Confirmed - Quick Question !!

gaiaroo profile image
11 Replies

I was diagnosed with RA mid August. My results showed a positive anti-CCP antibody with a titre of 50. Is this low/medium or high?!

As such I have been put on Methotrexate 15mg once weekly

Folic Acid 5mg 2 days after Methotrexate

Hydroxychloroquine 200mg daily

This feels slightly excessive to me along with monthly blood tests, chest X-ray etc

I'm only 28 !!! Advice on the above results would be wonderful !!!

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gaiaroo
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11 Replies
3LittleBirds2 profile image
3LittleBirds2

Hi, I'm no expert but that seems like a fairly low positive....mine was 180. Your medication may seem excessive but they tend to treat aggressively from diagnosis and take it from me if I'd had that choice I would have taken it. I didn't have my anti-ccp taken until 2 years after diagnosis if I had maybe I would have not ended up with joint damage if they treated my RA more aggressively! Good luck with everything and yes you're young which is even more reason to get your disease under control from the start! 😊

helixhelix profile image
helixhelix

Like 3LB mine was far higher on diagnosis, about 180, so agree that 50 is weak positive. But it really shouldn't be taken as indicating that maybe your RA will also be weak as that doesn't follow. People with negative results can still have a very aggressive RA.

And there's a lot of work to show you get best results if you treat RA very strongly from the start, and gives the best likelihood that you'll get into remission and even be able to reduce the drugs slowly in a couple of years time. And your doses are quite moderate, even if it feels like a huge amount. Being diagnosed with a chronic disease, especially at your age, takes a bit of getting used to. But hopefully in a couple of months the drugs will have started working and you'll be able to get on with your life (apart from a shed load of pills every day that is...).

cathie profile image
cathie in reply tohelixhelix

I was just going to say that early aggressive treatment can make a big difference.

nomoreheels profile image
nomoreheels

Hiya gaiaroo & welcome to us here. It must feel like a lot of medication, particularly considering your age & likelihood of not needing to follow a drug regime before but as has been said better to treat aggressively (albeit not a too high a dose) rather than undermedicate & risk damage. Your Rheumy has probably taken into account your age when forming his plan for you so I see that a positive though it might have been helpful if he'd taken a little time & explained it all to you.

The Anti-CCP test only forms part of the whole, what is of more interest to your Rheumy is that both this result & your Rheumatoid Factor are positive, usually meaning there's a greater chance of having the disease & along with the imaging & his examination all form your diagnosis, choice of meds & their doses.

Hopefully you'll start to notice a difference in in the coming weeks. If you need any further help we're here, just ask away & if we can help we will. :)

Diddydriver profile image
Diddydriver

Hi there I too was diagnosed in min August, my anti CCP was 340, so 50 is relatively low , but that does not mean that is or not aggressive , it is only an indicator. That is what I understand anyway. Like other people have said it is much better to treat RA aggressively at first to try to stop joint damage. Things are very confusing when you are 1st diagnosed. I found that this forum is excellent I couldn't have got through the past couple of weeks without these wonderful people. If you don't understand anything someone will try to explain for you. Do take care and most important that I have found out is REST is as important as drugs.

Hi gaiaroo,

It is not always possible to directly compare blood results with other people as different labs have different control samples. The anti-CCP blood test that you mention is not always positive and in about 40% of people with RA it comes back negative but has been mentioned a low or negative result for anti-CCP does not always mean that the RA is not aggressive.

I have put a link to our article on blood tests below for you to look at:

nras.org.uk/laboratory-test...

There is no one right way to treat RA as everyone reacts differently to the DMARDs and what works for one person may not for another so in the beginning it can be a bit of trial and error to find what works for you. It is important to be monitored in the early stages to ensure that things are working for you.

If you would like any more information please feel free to call the helpline on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

Regards

Beverley (NRAS Helpline)

Onslow315 profile image
Onslow315 in reply to

Hi Beverley,

If a person has a positive Anti-CCP result, can anything be learned from repeating test? I have read conflicting information in regard to this. It seems that existence of anti body is what is relevant so repeating test to see if result changes is really of no meaning. Thank you :)

in reply toOnslow315

Hi Onslow315,

The anti-CCP test is used in the diagnosis of RA but it has it's limitations as mentioned before. The common tests for monitoring the progress of the condition are ESR and CRP and details of these can be found in the link I provided. As far as anti-CCP goes for monitoring the disease it is not reported as being useful (although we do hear on the helpline from people who have this test done on a regular basis with the other ones). I have put a link to Lab Tests Online and their information on this test and they report that it is not useful in the monitoring of RA:

labtestsonline.org.uk/under...

I think sometimes these tests just come as a complete package.

Hope this helps

Beverley

Downtime profile image
Downtime

Hi, I was diagnosed in July with seronegative R A. I had no inflammatory markers in my blood tests. I had considerable joint pain, tendon pain, fatigue and fever. I was prescribed 15mg methotrexate and 5 mg folic acid weekly.

10 weeks on I am much better. Very little pain better energy levels etc and no change in the inflammatory markers!

I am hoping that once I get into full remission the dosage will be reduced. I feel that you do need to get under control as soon as possible.

Keryn profile image
Keryn

Ive been dealing with this for 2yrs it took 1yr to get a diagnosis and been on treatment for nearly a year. Iam 30, treat it aggressivly it can spread very quickly since i was daignosed i have also been on aggressive treatments but it hasnt slowed its progression and in less than 12mths ive gone from ra just being in my hands to it being all over my body pretty much in every joint. My advise treat it as aggressivly as you can so it doesnt spread.

VictoriaAnn profile image
VictoriaAnn

Hi,

I'm only 22, I've had ra for just over 2 years. I'm on sulfusalazine, folic acid and 20mg methotrexate.

Mine was and still is in the 100s! Although I don't have much flare ups at the moment.

I also have monthly blood tests. I also had xrays of my hands, wrists, feet and chest.

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