Re-testing of RF and anti-CCP - is this done by rheum... - NRAS
Re-testing of RF and anti-CCP - is this done by rheumatologists routinely and if so does it change/lessen if remission is achieved?
Hi Tilda. There is no hard and fast rule with regards to the rheumatoid factor titre and the severity of the disease. Not sure if the clinical course pattern changes, but any books ive referred to show it as a graph. I think they refer to your das score too.
Like you I have just had an x ray to check for sacroillitis. This area has caused me so much pain for the last 3 months.
I'm asking because Shell refered to the anti-CCP in a different blog and it reminded me that I was told about 18 months ago by my GP that mine was negative and consultant said on this basis he would be unlikely to diagnose me or put me on MTX - both of which he did several months later. My RF was only a low positive at 24 and as you probably know I'm seeing a different consultant on Friday and wonder if these two test results alter as the disease progresses or remits.
I only just realised that I have absolutely no idea - although I do if course know its possible to be negative for either or both and still have RA. Also wondering, as usual, if I really need to be on these meds for my RA if it is possibly non degenerative or Palindromic. I've only ever had my hands x-rayed about 2 years ago when synptoms started and never had any ultrasound to check for inflammation so just wondering how would I know if any damage had already occurred without x-ray. For instance I can't put weight fully on my wrists - especially right wrist because it hasn't got full range of motion back and my fingers won't clench fully but not sure if these are important to determine ongoing treatment or whether that's just small things I should expect and get used to?
Yeah the sacroillitis is so annoying but I keep thinking I can probably just move around and shift it somehow - its not really working though as soon as I sit it starts aching away. Sorry you've suffered it too. Xx
I thought you had actually had positive tests for RA, but with you complaining about sacroiliiis and with family history of psoriasis, it all makes a lot more sense now, as the hand stuff, the SI stuff etc fits every bit as well with spondyloarthritis as it would with RA. Might be well worth putting the question to this different rheumatologist about whether they are actually considering spondyloarthritis as well as seronegative RA. Also, if your xray has shown sacroiliitis, ask what grade changes it shows (its the New York criteria) - if its bilateral grade 2, or unilateral grade 3, then that should actually give you a diagnosis of axial spondylitis of some sort (probably either ankylosing spondylitis or psoriatic arthritis).
Ps and a rheumatoid factor of 24 is positive - just not a high positive.
Earthwitch I don't have a family history of psoriasis - its eczema which is not the same. I have been told twice by the first rheumatologist that its RA as a working diagnosis, but to keep an open mind things can change, new symptoms arrive. From that I deduce he is obviously alert to the possibility that this might turn out to be a different type of inflammatory arthritis and I told him about the eczema.
Others on here get back problems with RA too although I'm aware that they are much more prevalent with Spondyloarthtis. I haven't had x-rays yet - my GP examined my back and told me it was the sacroiliac joints that were giving me the problems. The MTX and Hydroxy have been working really well since I switched to injectable and I'm not really thinking this is inflammatory because my ESR has come right down to 26 now. It could be OA or it could just be because I've overdone things I've the festive period. I had severe lower back ache about 7 years ago and its not nearly that bad - just sore and achy.
I want to know more about these factors too. I have a rheumy appointment tomorrow & will be asking if the blood test I have then will check these & if they change in line with course of disease. I'm sero-neg for Rheumatoid Factor & think my anti-CCP was positive at first diagnosis but it's one thing I don't have a record of. Luce x
That's the trouble really is that the consultant doesn't always share the information and if the GP prints off blood tests results they don't include those taken at the hospital. If your anti CCP was positive then that's much more specific to RA than the RF. I think this is why I'm always a bit unsure about having RA or not. Obviously I accept I've got something but I do always wonder about it being Palindromic because, while I'm good about taking MTX by injection for disease activity I'm not keen to take it just to control the pain. If it was only palindromic I would be much happier to use pain relief as and when needed. So I want some more assurance that this is full blown RA and if I wasn't on DMARDs I would be being gnawed at by the disease? How to express this to a new doctor during a busy clinic is going to be another matter entirely though! X
Hi Tilda. Dont know if this will help or not, i asked that question to both my gp and rheumy consultant. When i first got diagnosed my rf was positive at 778 and crp was high too and positive i cant find my sheet that my gp gave me a copy of when first got diagnosed. Rhuemy said that no these tests are not routinely done as its not a correct marker for them and i thought maybe rf would come down if in remission. They say that they go by esr inflammation markers and how many active flares we have over a period of time by monitoring bloods mostly esr. Occasionally they may recheck ana, antibodies test i had this done when first diagnosed but i have had this redone recently still awaiting results. I hope your keeping ok? Hope you had a nice xmas and new year and i hope the year ahead you stay well. Take care. Lynda xxxx
Thanks Lynda yes that's really helpful. I had my RF taken by my GP twice over six months and it hasn't changed much he told me. I have no idea what anti-CCP was except that it was negative. My ESR was 70 when first tested and remained high for ages so that obviously helped diagnose me along with swollen knuckles which I think are quite specific to RA - plus description of roaming pain everywhere - especially in ulnar joints of wrists. Just wondered if I'm going to be classed as in remission now that my ESR is down to 26 - and apart from back pain and mildly sore cranky right hand and residual stiffness in both I think I basically am. Just want to get a clearer sense of what to ask and tell him on Friday. TTx
Ps but RF last taken 18 months ago.
I'm the reverse of you, in that I'm sero-negative for RF but positive for Anti-CCP. My rheumy said that the RF factor may well appear in due course, but that it was far less specific for RA so really didn't matter (RF positive is also seen in Sjorgen's and viral hepatitis). She said that positive RF factor tends to indicate patients with higher ESR/CRP, but less active damage, but that so many other factors to consider that it's not an absolute science. Once you've got the factor, it tends to stay around.
So most of the reading I've done has been re anti-CCP. In summary this can appear years and years before any symptoms, and tends to show a more grumpy, damaging sort of RA. There was one study that followed positive anti-CCP patients for several years, and only 5 out of about 300 turned negative. The rest stayed positive, and even if amount reduced a bit it did't seem to make a heap of difference. And with some it increased, but also didn't make a heap of difference. Anti-CCP is more uncommon in patients with PsA.
So conclusion that I've come this that these tests are used most in diagnosing the disease, that researchers are trying to establish how useful they are in working out future development of the disease in patients and helping select the right treatment. but this is still a way off, so as far as we're concerned they don't help much in terms of identifying treatment or remission. So probably not much to be gained in asking for re-tests. Px
Okay thanks Polly. As I've just said in reply to Luce this is precisely what bothers me about current treatment I'm taking. I know my GP was quite sure that a positive RF and high ESR and CRP plus symptoms = fairly aggressive RA to begin with, but now that things have quietened down so much its made me really question just how destructive my RA actualky was and is.
And with having a negative ant-CCP, as you say in relation to your positive one, could indicate that whatever I have may be palindromic by nature rather than actively destructive? And while I'm not wanting to see any damage occur to my joints of course, I also think that if I'm conclusively negative (and if as you say, this is unlikely to alter much) then perhaps I should be checked more thoroughly i.e. by ultrasound for inflammation and by x-ray to see if there's damage, before being just stuck on these drugs for a lifetime? Tilda x
I always understood that CRP gave a short term and ESR a longer term picture of what was going on. CRP would reflect other iinflammations - such as those arising from an infection. What Polly says would fit in with my experience that recently they have tended to test the ESR rather than CRP. But then ESR can increase with age.
I think it helps when you remember that medicine isnt an exact science. Thus noone really knows what make us tick yet.
Yes I think that's spot on Cathie but with impending rheum apt I'm in research/ detective mode. Do you mind me asking if you are RF negative or positive and same question for anti-CCP? Did you get these retaken when you moved from Oxford to Edinburgh. Its the anti-CCP that I'm looking into not the CRP. Tilda xx
For me it's curiosity more than anything, I like to know & then, most of the time, I choose to ignore or forget. But I think Tilda your desire to get off mtx one day is the way to go. There is a lot of reassurance to be found re. drugs on this site and that's as it should be. But then on the other hand I don't like it when there are thoughts I'm not meant to think! So Rheumy doesn't like me mentioning wanting to get off mtx eventually but I will, it's a possibility however slim & I'm no fool, I'd only give it up from an informed position. Random info. gathering can be useful as you never know what might turn out to be relevant or enlightening.
I don't mind taking MTX if I know its necessary Luce but with a negative anti CCP and a slight question mark hanging over my diagnosis plus this new sacroiiiliac pain(worse today ;-( ) my curiosity has suddenly been aroused. I did find this on lab test site earlier today;
"When individuals are negative for CCP antibody but have a positive RF, then the clinical signs and symptoms are more vital in determining whether they have RA or some other inflammatory condition. When someone is negative for both CCP antibody and RF, then it is less likely that they have RA. It must be emphasized, however, that RA is a clinical diagnosis and may be made in the absence of positive tests for autoantibodies."
And this sort of confirms what Earthwitch is saying about Spondy and me I think? X
I think there are lots of possible reasons why RA can be misdiagnosed & I tend to think that it is over-diagnosed. Much of the time it doesn't matter too much given the trial it & see approach to treatment / crossover with treatments for different forms of inflammatory arthritis but then sometimes it does matter of course. So if you don't have RA you might need different treatment regime or may be able to dispense with the DMARD - I do understand where you are coming from on this. I sometimes suspect I could have a different form of arthritis given my apparent near-remission and, truth to tell, my rheumy's apparent lack of rigour . Additionally I want to be open to the option of coming off mtx even if It is RA should low inflammation levels prove sustainable without the drug. There's everything to play for, really. x
Oh you make me feel more optimistic Luce - thanks! It's always a worry that we might just be left stranded on these drugs without proper medical backup - simply on the hunch of our consultant isn't it? But mine seems pretty cautious I have to say - I don't think he's at all trigger happy about diagnosing RA. But he's left the door open for himself or this other rheumy to change the diagnosis so I think he's pretty switched on.
I've been worrying for quite sometime now that this might be a spondyloarthritis - which can be easily as bad as RA and less known understood. The thing that consoles me is that I have responded so well to MTX - especially by injection. But I'm a bit glum at the moment with lower back ache worsening a little each day and realising that wrists are aching a bit more and I haven't been able to put weight on them since the original flares - especially not my right one.
So perhaps RA is over diagnosed and Spondyloarthritis isn't diagnosed enough? Or else maybe, as in many things in my life, I'm just a bit freaky? Well no-one else seems to have a negative anti-ccp and a positive RF (just!) on this forum so I'm making sense of my rheumy's "watch for new symptoms - things could change" now with a whole new respect! Tilda x
I was positive but I dont know when this was done. I meant anti-CCP actually.
I'm sorry, but one thing I've become aware of is my attitude. It isnt very good and I have to be more aware and am trying!! but basically I just want them to give me something so I can just get on with my life! Its perhaps because my mother (who had ra) was rather too obsessed with her condition, so I tend to try to ignore it until it gets too bad! So I've only relatively recently started carefully collecting data.
Its been snowing here perhaps its this weather that has given me twinges in my shoulder. Not terrible but noticeable
XXX
hope you didn't think for one moment I was miffed by your attitude which seems fine by me. I just meant that i kind of take several positions at once about my illness which is probably a lot more normal than it sounds! if anyone tried to snatch mtx off me for no good reason I'd be livid & I'm astonished by how much it has given me back my life. But at the same time I don't ever want to take another mtx tablet & am half-daydreaming about & half seriously considering a future without it. I think all these things are quite reasonable sort of! Lucex
Hey until this backache started up I was singing from almost the same songsheet Luce re remission. I know you're not miffed - we are very similar I think? A mixture of curiosity, cynicism and optimism all mixed up - basically bundles of contradiction! But I really can't understand certainty - maybe because I'm the daughter and granddaughter of lawyers and always play devils advocate with myself. So like you I want MTX - and I even want RA as opposed to some unknown or even worse sound thing such as PsA, Crohns, MS or an undifferentiated Spondy - I can barely write it let alone say it (sorry Earthwitch).
Its a bit like Brit Art - especially Tracy Emin. I can slag her off to my heart's content but if anyone else does I will defend her down to the last stitch in her clothes! Tilda x
My mother was the opposite - didn't let anyone really know what was going on, so it was only in recent years that I really realised how bad she was, or how much treatment she was having. That meant that I never made the connection to my own stuff early enough and ended up putting up with far more than I ever should have because I just thought it was the "normal" arthritis that everyone in my family had. Really wish my mum had talked about it more and I had started reporting stuff to doctors in my teens or 20's (even if I didn't accept treatment till much later). At least they wouldn't have been able to tell me it was degeneration then!
Oh dear poor you re your shoulder hope it doesn't get any worse. A friend just texted me from Edinburgh saying it's snowing and very cold. Here it looks like it could too - am fretting because our car is in garage having failed its MOT. We have been given a little polo as courtesy car but I'm pining for my heated seat with its shape perfect for my sore back and more importantly winter tyres and 4wd. Got such a busy week coming and knowing my bad luck the rheumy will get snowed off as he did this time last year!
If my back wasn't giving me such jip I don't think I would be thinking so hard about test results, meds etc although like Luce I'm a very curious person by nature (nosy really!). If I'd been more of a science scholar at school I think my career if choice might have been as a forensic scientist but as things stand its more amateur detective! Tilda xxx
Snow hasnt settled here (yet) so things are OK. Except that P has just gone back to mK after four lovely weeks here. Hes back in two. Too long. And my appointment with the rheumy is looming. But shoulder is Ok it hurts but not enough to be upsetting. Have an afternoon of mending (my new 'hobby') and reading the new drawing course.
Winter tyres are really important arent they. Hope you dont have to drive too much.
Can't drive at all today because of my stupid back Cathie. Here there's no snow (yet) but it's grim - dark and damp and cold and windy - yiuck! I think you and I have quite a similar approach to doctors and RA actually. I'm now on a bit of a journey again having just accepted that this is RA (well sort of) and not thought much about what my results might mean and why my consultant might have put a question mark over the RA diagnosis in terms of new symptoms shedding new light. I don't want to be in your situation at the end of this week and be told that it's morphed into something else - or be rediagnosed - without having done my homework is all. So I'm checking out the spondies now - Earthwitch hope you're proud of me?! Tilda x
Definitely get some different questions ready for this new rheumatologist!
I am really starting to get incredibly concerned about the difference in the way RA/Seroneg RA and spondy are dealt with in the UK from other countries. I know spondy is much harder to diagnose because there aren't conclusive blood tests, and the damage can take years to show up. What really worries me is that so many folk seem to be brushed off with "seroneg RA" and then given DMARD treatment, when actually that isn't the best thing for spondy. It also greatly delays getting onto more appropriate treatment if you have to spend years working through the DMARDs, and in that time, none of them will be doing anything for the spinal stuff, which means more possibility of disability and permanent spinal damage. Its so at odds with all the push to treat RA early.
I just don't know whey they don't acknowledge the possibility of spondyloarthritis very early on, or give out an "undifferentiated spondyloarthritis" diagnosis as often as they give out a sero-neg RA diagnosis - the disease is every bit as common as RA, so no excuses about it being rare. (something like one in 100 folk with spondy).
Off soapbox now.
Well I dread the idea of this being spondy rather than RA Earthwitch. I don't think it's any less scary as a diagnosis and also many less people have heard of it or know the implications even than they know about RA, and that's saying a lot! So I'm hoping I maybe just have a non-aggressive type of RA because of my negative anti-ccp - but would like this dr to get me some x-rays or ultrasound done of my hands and wrists soon to clarify that damage has not already occurred.
I'm starting to realise that it's not right that I can't put weight on them and that I still can't fully clench my fingers and one of my little fingers pokes right out and has turned round so that the nail faces away from the other fingers. Also two of my knuckles are always very raised and often hot to the touch. It's small fry compared to what folk like Allanah are going through but having this pain in my lower back continually is pushing me to think and research all this stuff more. But I'll keep the RA for now thanks! Tilda x
Its good to know other people like oneself isnt it! - and different.
Paddy has left me with a briefing document on lupus and the effects of discontinuing my anti-tnf. Its great to have a proper scientist to hand! He is off to MK and Paris and I'm keeping my fingers crossed that daughter will accompany me to the long awaited appointment. Its taken her a while to accept my RA I think and wont speak about how it is hereditary!
I have one mincepie left over from christmas. I'm not used to life without problems but this xmas/ new year has been so unclouded and peaceful! just want it over again - the time rather than the razz ma taaz
XX
Well that's pretty lovely to know re unclouded Christmas Cathie. Mine was too but the backache and turning fifty have sort of clouded it all a bit for me. As I have no parents or immediate family with RA - let alone PsA (which is usually inherited I've read today) I don't have your sense of inevitability about it - but I do have the same reaction to your daughter re diabetes because that's been around my dad's family for many generations. That's why I'm so determined to keep losing weight until I get some shape back to me (other than bolster!). I did used to avoid the subject of weight and diabetes abs heart problems with both parents when they were alive - try as they might to get me to stare all this in the face. Ironic really that I'm hypothyroid and probably got RA and yet neither of my parents had these! Tildaxx x
