Help with diagnosis: About 6 weeks ago I started to get... - NRAS

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Help with diagnosis

mole147 profile image
25 Replies

About 6 weeks ago I started to get a pain in my right wrist and then my fingers started to swell. I could not put any weight on it. The same thing has happened to my other wrist and my right ankle, I also have a stiff neck. My finger are now like sausages and very painful. I have been taking Naproxen and Paracetamol. I have had a blood test and been to see doctor who appeared to rule out gout or RA but said that my white blood count was high along with another indicator suggesting some sort of infection. I do not feel unwell or have a temperature or rash. He then said to wait another week have another blood test and see if they were still high and he would do something. It has been a very painful week and the tablets appear to do very little. I am going back tomorrow to get results but I am not hopeful of a diagnosis. Does anyone have any thoughts as to what it could be?

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Livingston profile image
Livingston

RA can't be ruled out on the basis of a blood test since there is no blood test to diagnose it.

Ask for a referral to rheumatology.

ronvdz profile image
ronvdz

Sounds like my experience with R.A.

Livingston profile image
Livingston

High white count & high CRP (I presume that's what the other test was) can indicate infection but they also indicate inflammation. If there's no sign of infection, inflammatory arthritis should be considered a possibility.

mole147 profile image
mole147

Can the symptoms come on that fast, 6 weeks ago I had no symptoms and now I can't use my hands for the simplest task and I am limping. Also having difficulty sleeping because of a stiff neck.

helixhelix profile image
helixhelix

When I got RA it hit me like a train. I'd had a few aches & pains that I'd ignored for a while, just little passing niggles really, and then in about a week I went from being normal to practically bed bound. It just took off.

Anyway, most GPs can only test for the rheumatoid factor, and about 40% of people with RA are negative for this. So this really doesn't prove anything one way or another. Livingston has it spot on. So if there's no sign of an infection then push your GP to refer you urgently to a rheumatologist.

Here's a link to the NRAS page...maybe print out the poster & hand it to your GP?

nras.org.uk/have-you-got-th...

cathie profile image
cathie in reply to helixhelix

Yes my symptoms came on suddenly during a walking holiday in Cornwall. I had RA in my family so I wanted the rheumy to exclude it, sadly they couldnt.

olive2709 profile image
olive2709

Can you take anyone with you a lot of people find this helps extra ears plus make list of questions don't let GP push you out of door without getting answers and or referal

mole147 profile image
mole147 in reply to olive2709

My Wife will come with me, she is very supportive and will speak up. Thanks for the advice.

nomoreheels profile image
nomoreheels

Well something is definitely going on isn't it? Hopefully your GP has taken bloods which include Rheumatoid Factor & if he's on the ball also anti-ccp. What may give somewhat of a false reading is you having taken paracetamol & naproxen for some time & to the day of the test as both will affect inflammation levels but you probably wouldn't think of that, I know I didn't when my GP mentioned to stop taking the pain relief & anti inflammatory she prescribed me. What might be an idea is to ask your GP if it would be helpful to stop taking them a couple of days before your repeat test. Let's look on the bright side & you have a clear result (by that I mean you don't have an inconclusive result) so you're referred/treated without further delay.

Let us know how it goes won't you?

mole147 profile image
mole147 in reply to nomoreheels

I definitely will. The problem is not knowing what is going on. Should you try and rest the joints that are hurting or should you try to use them as much as possible. Thank you for the reply.

nomoreheels profile image
nomoreheels in reply to mole147

You're welcome. Rest as much as feasible & apply heat or cold whichever relieves the pain, some find warmth better others cold. If choosing cold use a bag of frozen peas or similar as long as it will mould round your joints, wrapped in a teatowel so you don't get freeze burn. Don't try to not use them though (if that makes sense!) even though they're painful as you'll stiffen up which isn't good either, just don't overuse really. I find washing up in hot water with rubber gloves on eases when I have pain & stiffness in the joints of my hands, so no excuses!

Beaches2 profile image
Beaches2 in reply to mole147

Hi

Sounds like when mine started except it happened over about 24 hours....from fit and healthy one day to horribly swollen and painful hand the next quickly followed that day by other hand and other joints.

My rheumatoid factor was negative, luckily gp still referred me as I was in a mess. Rheumy did loads more tests and diagnosed ra.

I hope there is a simple answer to your problems but just in case please press your gp for a referral to a rheumatologist.

You should probably rest the affected joints and just do some regular range of movement gentle stretches for now.

Good luck

Mine started in both wrists and both knees and soles of my feet would burn as if I was walking on hot coals each morning. A locum GP said Carpal Tunnel (both wrists?) and wear and tear for both knees. A month later my GP took bloods and said probably post viral arthritis - very painful but would go in a few weeks time.

A few weeks passed and it didn't go anywhere and he phoned to say my rheumatoid factor was positive and inflammation markers high so he had referred me to a rheumatologist already. It took a further 8 months to get diagnosed with seronegative RA because for months it just took the form of polyarthritis with little visible swelling. Hope you get answers sooner than I did. Push for a referral whatever your bloods say. Take photos of swollen joints to show your GP or the rheumatologist in case it plays hide and seek on the day.

Meanwhile rest your painful joints but try for gentle movement to keep mobility/ function. Be especially thoughtful with your fingers as the joints are wee.

mole147 profile image
mole147 in reply to

Sorry to hear you had such a bad time. Hopefully I will get more information today on my problems. My swelling seems to be pretty constant.

Ganit profile image
Ganit in reply to

Hi Twitchytoes,

I hope you don't mind me asking, but I was just wondering why you are seronegative RA when your rheumatoid factor was positive?

Ganit :)

in reply to Ganit

Good question Ganit. The answer is that my RF was only a weak positive of 24 and my anti-CCP was negative. I was diagnosed on the basis of widespread joint pain and classic synovial swelling in my hands and fluctuating ESR and CRP.

My new rheumatologist said ten days ago that the term seronegative was questionable for me but I've only just learned the exact numbers and since 2013 arthritis of any kind has been the least of my problems. So I do fit the seronegative heading presently at any rate! Twitchy

Ganit profile image
Ganit in reply to

Hi Twitchytoes,

It does make me wonder though why they have a certain range if they are not going to stick to it! The normal range is 0-20, which you probably already know, what number do they class as positve then and considering you have all the symptoms as well, this just baffles me! Did your Rhemy say at all?

Sorry if i sound like i am ranting!

Ganit :)

in reply to Ganit

Rant away please! But I think in rheumy world anything over 30 is considered positive in the same way as with ESR you aren't considered to be significantly inflamed unless your ESR is over 40 or unless your CRP is over 15 by lots of rheumatologists. And yet with both the labs tests show normal range as 0-10.

So the way I see it now is that there's rheumy world and then there's the rest of us, including some GPs, who see pain and raised inflammatory markers or positive antibodies as more personalised signs. Each of us have our own personal ranges - what is normal for us doesn't always fit the text book lab ranges or the more conventional rheumy world ones either.

My GP has always been certain that I have an autoimmune disease but knows that it's a huge spectrum. My old rheumy seemed to also feel that I have certain autoimmunity but is less easily convinced by borderline bloods. And I did ask him at the time about the positive RF and he said "good question. But in a sense it doesn't matter what we call it - it's how we treat it that counts".

But I believe the seronegative/ positive thing is very relevant to how they treat it. If you are seronegative then you are less likely to meet the criteria for some of the biologics drugs for instance. I once asked him about these and he dismissed my weak positive RF as not being worth a bean in relation to meeting criteria for this group of drugs.

I suspect it will be a completely negative reading this time because I think my autoimmunity has become more Sjogrens/ Lupus like and systemic. It's not in my joints presently anyhow although I am still on steroids.

Seronegativity can be a curse but I also think that my reading of 24 was a clear positive for me at the time. That's certainly what my GP felt.

Ganit profile image
Ganit in reply to

Thanks for that, i know exactly what you mean though, as i am serongative.

:)

I realise this sounds a bit odd but try to at least be thankful that your swelling is visible because it should help you to get a referral whatever your bloods say. Sorry you are in so much pain though. Take care and let us know how it goes.

Clare-NRAS profile image
Clare-NRASPartnerNRAS

Hello there,

Please consider calling the NRAS helpline for some information about getting a diagnosis 0800 2987650 or you may find the link below helpful to see what steps are involved

nras.org.uk/1-recognising-s...

As someone else has said here there is no diagnostic blood test that can confirm RA, the blood tests are only an indicator and should be taken into consideration with many other factors. From the description you have given here your GP should be referring you into see a rheumatologist as a matter of urgency as per the NICE Guidelines.

Remember NRAS is here to help every step of the way so do get in touch.

Regards

Clare

mole147 profile image
mole147

Thanks to everybody for the advice. I went back to GP this morning and after examining me telephoned the hospital to get me seen as soon as possible. I have just got back after blood tests, xrays, examinations and they think that because my Father suffered with Psoriasis that I probably have that form of arthritis but it could be RA. I am going to be put on DMARDS after they make a definite diagnosis. I had a steroid injection and they are telling me that it should help over the next little while. Once again thanks to everyone.

mole147 profile image
mole147

I have a few a few blood test figures. CRP was 25 which I know is high, Anti-CCP 0.6 U/ml, Rheumatoid factor <20 iu/ml. I am not sure what it all means but I am sure one of you will.

helixhelix profile image
helixhelix in reply to mole147

To get the best out of the steroid jab try to rest as much as you can for next 24-48 hours, and then it should start to kick in and should help for up to 6 weeks. Your CRP is showing some inflammation, but not sky high so suggest that the steroid should make a good difference. And the others are that you are negative for rheumatoid factor which is probably why the GP ruled out inflammatory arthritis to start with. The anti-CCP I think translates as 60u/ml (maths is not my strong point!) so is positive.

But although a diagnosis of a chronic disease is probably not what you wanted, it does at least open the door to get treatment. And for the majority of people it is a manageable disease. It took me a while to find the combination of meds that worked, but now life is back to 95% normal.

olive2709 profile image
olive2709

Hope the jab gives relief may take a couple of days when my daughter had one it took 48 hours approximately she is the one with RA

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