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Baffled after negative arthritis blood test!

53 replies

vickylou2004 · 18/08/2011 17:55

Hi all.

I had a blood test last week for rhumatoid arthritis which has come back negative.

Been suffering with sore stiff joints from neck down to feet, with upper back, neck, shoulders and arm being the worst. It's worse when I get up in the morning (eases after about 1-2 hours) and also after anything physical. Also all my joints have are constantly clicking and I suffer from Raynards.

Has anyone else been in this situation? Does it always show in the blood?

Any comments would be appreciated.

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vickylou2004 · 19/08/2011 23:17

Hi! The doctor gave me a two week course of NSAIDs. Said it could be a virus.

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vickylou2004 · 19/08/2011 23:19

I've recently developed bad circulation in my feet and it's driving me mad tonight. He said that the raynards is probably not connected to my joint pain!?

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OhYouBadBadKitten · 20/08/2011 07:57

sometimes it can be associated and sometimes not. You can have primary raynauds (unrelated) and secondary (related) Important to not let your feet get cold in the first place, once they get cold can be really hard to warm them up without external heat.

CurlyCasper · 20/08/2011 08:07

lots of good advice here. Definitely look up seronegative RA and push for further investigations. they could be right about infection - you could have reactive arthritis, which would be better, because it shouldn't be a chronic condition.

i hope you recover soon and don't have RA. i have had it since I was 16 and take a real cocktail of meds to keep it under control. i am serpositive, but have more inflammatory marker bloods done these days. They assess disease activity be combining the inflammatory marker blood results with evidence of swelling and pain, and how yourself say you feel. Good luck with getting some answers.

vickylou2004 · 20/08/2011 12:49

Ohyoubadkitten-I don't even have to get my feet cold, they are like it now with fluffy slippers on! I know about primary and secondary raynauds and I'm not convinced that the doc knows best on this one.

Oh well I suppose I'll see what the Naproxen do, I'm on 500mg and not made a difference yet but I think the doc said it can take a while.

Thanks for all the comments.

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OhYouBadBadKitten · 20/08/2011 13:55

I hope it helps you, it does take a while as you are taking it to bring down inflammation rather than as pain relief. at least if you give it a good go it strengthens your argument for seeing a rheumy.

nifedipine might be worth considering for the raynauds, it helps stave off the worst of my symptoms (not the cold, uncomfy feeling but does help limit the ulcerating chilblains I get)

vickylou2004 · 20/08/2011 17:14

Thankyou, I might try that. Have you never tested positive for RA?

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MatthewWrightOffTheTelly · 20/08/2011 17:49

Vicky, I don't think there is a single, conclusive test for RA. For exampe, per [[http://arthritis.about.com/od/radiagnosis/a/rheumfactor.htm this page] 20% of people with confirmed RA will never test positive for rhematoid factor. It's very frustrating not to be able to get a definitive diagnosis/prognosis but, as others have said, there is good medication out there now (though not without side effects, sadly) and again finding the right drug can be a bit hit and miss.

I'd definitely stick with the naproxen and give it a chance to help.

Also, I was thinking about this further last night. I don't think you should Make A Fuss, but I do think it's worth mentioning to the GP that you were confused/disapointed by the receptionist's actions. IMO she went beyond giving you the results and did try to interpret them ie RF negative = no RA = no action required. When you know (or do now Wink) that this isn't the case.

Again, good luck. Smile

MatthewWrightOffTheTelly · 20/08/2011 17:49

Bother this page Grin

vickylou2004 · 20/08/2011 18:21

Hi Matthew.

I think she was just reading what she saw on the screen. But yeah she should have said 'all clear but do you want to see a doctor and discusds it with him?'.

Also the doc said that the CRP and ESR was tested and there was no sign of any inflammation. Does that make sense?

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vickylou2004 · 20/08/2011 18:25

I've read your link thankyou. So I could still have it! I've actually suffered more today than I would normally during the day. Usually it's worse in the morning and aggrivated by anything physical.

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MatthewWrightOffTheTelly · 20/08/2011 20:24

I'm certainly not an expert but no sign of inflammation would be very odd in any form of active arthritis AFAIK. Hopefully some of the resident MN experts will be back to help out.

Won't suggest diagnosis via google but I do think if you feel that rotten you need to go straight back to the GP and press for more help. Probably obvious but try to record when you feel worst/what you've done/eaten/times etc.

Hopefully tomorrow will be a better day Smile

vickylou2004 · 20/08/2011 20:49

AFAIK?

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MatthewWrightOffTheTelly · 20/08/2011 21:12

"As far as I know". Sorry! Grin

vickylou2004 · 20/08/2011 21:34

Ahhh!

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merryberry · 20/08/2011 21:39

This is clear, comprehensive testing info: www.nras.org.uk/about_rheumatoid_arthritis/what_is_ra/how_is_it_diagnosed/default.aspx

vickylou2004 · 20/08/2011 22:15

Thankyou merryberry, that's a clear and interesting link.

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shitmagnet · 21/08/2011 11:03

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shitmagnet · 21/08/2011 11:05

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shitmagnet · 21/08/2011 11:09

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shitmagnet · 21/08/2011 11:10

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vickylou2004 · 21/08/2011 11:36

Thanks for the info.

To be honest I'm getting a bit confused and flaberghasted, yet I love and really appreciate all your feedback!

What I am getting is that some people get negative tests to start with and as the disease progresses they get a positive test. And that some people can suffer with chronic pain and some with mild. It will be interesting to see what happens after finishing the tablets. Maybe it is a virus, I'm not convinced. Would a virus really have the ability to affect ALL joints and be in the system for months (which is when I first noticed something).

Think I might start a debate: are the doctors always right?!

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merryberry · 21/08/2011 18:35

ask for an anti-ccp test. it's very sensitive and specific for RA. my gp did mine, but it's a postcode lottery if your area will do it at all, tbh, let alone the gp. if s/he won't, ask for referral to rheumy and ask for anti-ccp there. best way to galvanise medics i've found is to say that you are becoming unable to work, or if a SAHM, unable to care for the children so your OH can't work.

wonkylegs · 21/08/2011 23:38

I'm afraid that even anti Cpp isn't a definitive blood test, any rheumy worth their salt is going to diagnose you on a combination of clinical symptoms, disease progression (or your health over time), bloods and visual examination.
The main push is to get seen by a Rheumy rather than a GP and then for them to give you answers to your questions. You should at some point be given a diagnosis but the primary outcome you need is symptom relief followed by damage prevention then worry about what they are going to call it Wink
Hope you get some relief soon and we'll be here for you if you want to chat once they've given it a name Smile

vickylou2004 · 22/08/2011 07:26

Hi wonkeylegs.

I'm going to take my course of anti-inflamatories and see what happens. If I don't get further problems then it must've been a virus. I think that they are helping slightly.

Thanks for the comment.

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