negative RF but positive anti CCP

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negative RF but positive anti CCP

Postby dizzymember » Fri Apr 04, 2008 9:40 am

has anyone ever had a negative rheumatoid factor(RF) and a positive Anti-cyclic Citrullinated Peptide(Anti CCP) ?

On the 2nd of this month I had my 6 monthly appointment with my rheumatologist. I told in that in the last 4 months or so that my PR has been at one of it's worse, with extreme fatigue, of with the my GP has put me on sleeping tablets(but I try my hardest not to take them) He asked me all sorts of questions, like do I get rashes, because he found some on my lower legs, I said yes I get like eczema on my knuckles, but do not get any on my face.

In 2004 I tested negative for RF. I had the anti CCP blood test on the 2nd April 08, my rheumatologist said that the anti CCP test is more reliable the RF blood test. I will not know the results for at least two weeks!!! He wanted the test because my mum has RA. If it comes back positive then he wants me to start taking Methotrexate. If negative then it is just down to pain management and continue on my sulfasalazine. I personally think this test will come back negative, because all my bloods are normally in the normal range, for example the highest my ESR has been 14 and my CRP 4!!

whats made me worry, of which I know you shouldn't read into websites, is an article stating...

'In a study of patients with RA or palindromic rheumatism, anti-CCP (CCP1) were found in 55% of both conditions, indicating that palindromic rheumatism is closely related to and often progresses to RA (5).'
also it said this...
'Interestingly, using stored samples, anti-CCP could be detected 1.5 to 9 years before the onset of arthritis'

I am of to Cornwall today, to soak away all my worries....sorry for the rant.
Was diagnosed with PR 14th june 2006, but in Jan 2009 undiagnosed with PR and been DX with fibromyalgia(FM) instead.
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Postby elaine5000 » Fri Apr 04, 2008 11:10 am

I was diagnosed with PR 7 years ago and 5 years on it became more progressive and symmetrical. In December last year my diagnosis was changed to Sero-neg RA. All my bloods have been reasonably normal with a Negative RF. Bone x-rays also normal but inflammation on MRI Scan.
I often wonder if there are a lot more people out there that have PR symptoms but are diagnosed with mild RA just because many doctors are still not aware of PR. I think it is difficult to decide if the intermittent symptoms are the onset of RA or will stay PR.
The difference I find is that flares last longer with RA and stay in certain joints instead of roaming. I now never seem to be without any symptoms completely which is peeing me off big time. :twisted: I don't think my meds are doing what they should be, which is a worry. Don't really want to go on stronger stuff!
It seems to be a waiting game to see if any joint erosion starts.
I'm trying hard to stay positive but lately it's getting tougher. Summer is coming and I long to be active again instead of mourning all the things I used to enjoy doing.
Maybe I'm expecting too much.....Just want this THING go away!!!
:twisted:

Now, I feel better.......sorry for offloading!

Have a great day everyone!
Elaine x
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Postby dizzymember » Fri Apr 04, 2008 12:15 pm

you did what I did....offloading, doesn't it feel much better...

I do understand where you are coming from!! ohhhhhhhh I hate PR and RA
Was diagnosed with PR 14th june 2006, but in Jan 2009 undiagnosed with PR and been DX with fibromyalgia(FM) instead.
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Postby elaine5000 » Fri Apr 04, 2008 2:52 pm

Yes, it does help alot, Di. :D
Sorry you were the recipient, honey.
I haven't been posting much lately as I'm rather bogged down with it all. Can't see the wood from the trees.
The trouble is when the flares last longer there seems to be more down days as well.
I want my wicked sense of humour back.....now!. :evil:

Sorry to hear that your PR is not behaving itself, either and hope it all comes back negative for you.
Put all your thinking on hold and enjoy Cornwall.

Love & hugs
Elaine xxx
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Postby maz-au » Tue Apr 08, 2008 12:35 am

Feel for you, especially as your Dr is not explaining what is going on - I would find that very disconcerting; I always need to know just what is, so that I can deal with it, and am not left guessing.

Thought I would send you a step by step instruction on how to read anti-CCP and RF tests, hope it helps.

Regards,
Maz :heart:


Step 1:
Expect to have an anti-CCP test ordered along with the RF (rheumatoid factor) test to diagnose rheumatoid arthritis. Some patients may have a negative RF test with clinical signs of RA. The anti-CCP is used to confirm the presence of RA before it has developed adequately to show positive in other tests.

Step 2:
Consider a positive anti-CCP blood test and a positive RF result a likely indication that rheumatoid arthritis is the appropriate diagnosis. A positive for both tests are an indication that a more severe form of RA may develop.

Step 3:
Take note that in a patient with positive anti-CCP, a negative RF and clinical signs of RA, the diagnosis will likely be RA. If the disease is not actively present at the time, it is probable that it will develop in the future.


Step 4:
Expect the doctor to rely more on symptoms and signs of rheumatoid arthritis for a diagnosis if the anti-CCP is negative and the RF is positive.

Step 5:
Find it less likely that rheumatoid arthritis is present when both the anti-CCP and RF are read as negative. Some patients, however, have a diagnosis of RA, even in the absence of positive auto-antibodies.

Step 6:
Use the results of the anti-CCP blood test to distinguish the type of arthritis. Other tests are available that indicate an autoimmune disease, but the anti-CCP is specific to identifying rheumatoid arthritis from conditions such as systemic lupus erythematosus and hepatitis C virus.

Step 7:
Consider low levels of anti-CCP to be less significant in diagnosing rheumatoid arthritis, unless the results are in conjunction with symptoms and complaints common to RA.
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Postby CindySue54 » Wed Apr 09, 2008 2:13 am

maz-au wrote:A positive for both tests are an indication that a more severe form of RA may develop.

Oh yay! I am positive on both. :(
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Postby maz-au » Wed Apr 09, 2008 2:50 am

Hi CindySue,

The operative word is 'MAY' develop, not will develop!

It might not be as bad as you think it will be, so my thinking is --don't get carried away with this.

I believe it is always better to know what you are dealing with rather than be left in limbo wondering what you have -- at least if I know what it is I can help control it and work with the doctors to get the best result possible.

Stay positive,
Maz



CindySue54 wrote:
maz-au wrote:Oh yay! I am positive on both. :(
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Postby sue » Wed Apr 09, 2008 7:41 am

Yes I am positive on both counts and to begin with I worried myself sick what would happen but several years on and to be honest I am having hardly any flares at all. Just niggly aches but age must be something to do with that Dont worry about things, wait and see. :D

Sue
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Postby CindySue54 » Wed Apr 09, 2008 4:22 pm

Not really worried about it Maz!! Found out years ago there's no sense worrying about things you have no influence on!!
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Postby dizzymember » Sun Apr 20, 2008 3:07 pm

back from my holiday now, I spoke to the receptionist at my doctors about my results, but she will not tell me over the phone,(which is really unusual for my docs) I have to see my doctor to get the results, which makes wonder whether the blood test has come back positive? who knows, I'll find out tomorrow morning at 9.30.
Was diagnosed with PR 14th june 2006, but in Jan 2009 undiagnosed with PR and been DX with fibromyalgia(FM) instead.
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Postby elaine5000 » Sun Apr 20, 2008 5:55 pm

Hope you had a great Holiday, Di!
All the best for tomorrow
Hugs
Elaine x
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Postby CindySue54 » Sun Apr 20, 2008 9:55 pm

dizzymember wrote:back from my holiday now, I spoke to the receptionist at my doctors about my results, but she will not tell me over the phone,(which is really unusual for my docs) I have to see my doctor to get the results, which makes wonder whether the blood test has come back positive? who knows, I'll find out tomorrow morning at 9.30.

Hi Diz!! With all the new rules and regulations on privacy, I've seen lots of docs change their policies on giving out information over the phone. You might want to ask your doc when you see hi/her if you can "allow" them to give out the info? Much like asking for info to be given to a family member, see if you can sign a release or something.
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Postby dizzymember » Mon Apr 21, 2008 5:56 pm

YIPPEEEEEEEEEEEE it has come back negative, on the letter from the rheumatologist it says this -ve which my doctor reads as negative. I was really worried, don't know why really, because if it was positive then I would have got used to it. like in my original posting the rheumy thinks if this comes back negative that it is highly unlikely to turn into RA.

As for the receptionist, I think there is a couple of new girls on reception and I said to the doctor that I was really worried about this test results after speaking to the receptionist and she said the girls do not like to give information out on the phone, just in case they read it wrong, so I can see her point of view.

thank you all for your support....
Was diagnosed with PR 14th june 2006, but in Jan 2009 undiagnosed with PR and been DX with fibromyalgia(FM) instead.
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Postby sue » Mon Apr 21, 2008 6:03 pm

Dizzy so pleased your tests are negative. When I had blood tests about 14 years ago I rang for results and receptionist said all clear. Three months later I was in the doctors for aches and pains and he said why hadnt I come to see him as I had RA and a positive RF factor. I got an apology from Doctor and receptionists were no longer allowed to give results.

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Postby elaine5000 » Mon Apr 21, 2008 7:56 pm

Great news that all is OK, Di.
loads of hugz.
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