Can rheumatoid factor go down after a flare?

[Katt]

Seem to have a lot of questions going round my head at the moment. Been waiting for a rheumatology appointment for 13 weeks so far which is giving me too much time to think!! After 3 years of joint pain and fatigue and constantly getting a negative rheumatoid factor blood test result, on my last big flare up in Feb the bloods came back as positive for rheumatoid factor with my GP. Although certain joints are now permanently painful most swelling has gone down. I am worried that when the appointment for the consultant finally comes through my rheumatoid factor will be negative again? Any experiences or thoughts would be greatly welcomed. Going stir crazy just waiting for this appointment. Thanks for reading x

[Fcrooks]

Interesting to see the responses as my understanding if you have a positive RF test then you most likely have RA.  My doctor also gave me the anti CCP test which is an indicator as well and gives an idea of how aggressive the RA/ inflammatory decease is for you.  I have monthly blood work done and the RF test is not done anymore.  I'm doing well right now and often wonder if my RF factor would show negative now.

[farm123]

I have sero-negative inflammatory arthritis according to my consultants letters and that has not changed in 30 years whether the RF factor has been rechecked I don't know but this is enough for them.  This factor is not the only thing that is considered when diagnosing this condition.  Other blood test and joint examinations, how your feel and maybe xrays are referred to more than any RF factor - it is only an indicator.  If this has been going on for 3 years your GP may be wrong not to have referred you sooner.    If you have any swelling before your appointment try and take some photos and notes about how you feel.  Farm

[helixhelix]

RF can change over time, but everything I've read says that this is over years not weeks.  And usually it becomes positive, rather than the reverse.  Although I have read that after years and years in remission it can go back to negative.  

I think you've been treated quite badly so far, as there are people with active RA or PSA who are sero-negative and have no raised inflammation markers.   A good doc should double check using ultrasound or x-Rays before dismissing you.

Anyway, if it's been positive then that's on the record and unlikely that consultant will check again.  They may do inflammation markers and anti-CCP.    The best thing you can do is write out a brief history, flagging up joints pains and swellings.  And prepare to stand your ground!  

Hope the appointment turns up soon.

[Katt]

Thanks for your replies so far. Just to clarify my GP did send me to a rheumatologist 2 years ago but they were the ones that said all bloods came back negative and diagnosed me with fibromyalgia, after which they discharged me. It has got progressively worse since then with lots more joints painful and now swelling as well. I was given a chest X Ray under the consultant rheumatologist 2 years ago but she did not order any X-rays of joints?? With so many more joints flaring now and permanent pain once they have gone down I am starting to worry that permanent damage is being done while I am waiting. Am I right in thinking I should have an appointment within 18 weeks of referral? 

[kalel in reply to Katt]

Katt I am sorry to hear about what you are going through but if you want why not call the hospital that you are going to be reffered to and see if they will see you any sooner.

It seems like every situation is different but I have seen dr's two after the referral letter etc has been sorted out.

also the best way to prevent joint damage is to exercise and keep your muscle strongs.  Not an easy thing to do if you are suffering but as my physio always told me the stronger your muscles are the less likely you will incur any ra damage.

Good luck with everything

[DelicateInput in reply to kalel]

Phone the hospital (outpatient appts) to see if they have actually received the letter.  My hospital hadn't, after two months, because the GP surgery sent it to the wrong fax number and took weeks to actually type it.  I feel this is a delaying tactic by the GP.  Also, get a copy of the letter and you might find it is misleading, hence you are constantly being put back to accommodate "urgent" cases.

If the hospital has the letter, they should be able to tell you when your likely appt time will be.  If it is a long way off, keep phoning every few days or even sooner to see if you can get in with a cancellation.  I waited six months and the hospital was not proposing to see me for some time after that, but I kept ringing and was offered a cancellation albeit it was still a six month wait.  The reason for this is that the GP had made it sound as if there was was nothing wrong other than a bit of OA which was normal for my age.  She didn't even bother to do any x-rays.  I feel too much reliance is placed on blood tests - which can show inflammation for a variety of reasons including overweight or a bad diet.  If you go to the gym, as I did, then it will keep the inflammation levels low and the blood test results will be low/normal.  My initial blood tests were very low but rose steadily over a number of months - purely because I stopped going to the gym, eg going from 0.2 to 5 to 15 and above.  As soon as I go to the gym regularly, they drop.

[Hidden]

I just got back from my doctor who diagnosed me in September with Rheumatoid Arthritis with Rheumatoid Factor Without Organ involvement and Primary Fibromyalgia. Today he tells me he is taking my off Methotrexate, after only five doses and will take me off Plaquinil too because he says I don't have RA and my Fibromyalgia is causing all my problems.

What the F*@#?

Yes, he changed my RA Dx to Arthritis-both hands. What?!?!? Not even Inflammatory Arthritis, which was my DX when I first started seeing the other Rheumy. Clearly he has lost his mind. He looked at blood test that my Ortho took last week and based this decision on my SED rate. My SED rate has always been normal but my CRP is always high!

He took no blood test today. So I saw my Ortho whom I trust so much afer I saw the Rheumy and because I have major swelling in my knees he replaced. He asked me to have my Uric Acid checked. No one has done that and I always report that my mother and all four of my siblings have Gout.

My head is spinning! I guess we will see what happens.

[Jste in reply to Hidden]

My doctor told me that sometimes plaquenil can help fibromyalgia.