I've had to leave work and come home. I'm in too much pain to be in the office.
I've got home to find a letter i've been dreading. My bloods have all come back normal apart from ESR (only slightly raised). This is what I feared most
My bloods were taken after 4 months on NSAIRDS and 4 days after I started a course of steroids, during a time when my pain and visible inflammation where both very low.
The specialist suspects palindromic rheumatism, which is characterised by periods between bouts of being completely normal, ok I am never pain free, but surely, bloods should be taken during a flare? I've just called the rheumatologists secretary, but my rheumy is still away on leave. She's going to ask another Dr to find out if i'd benefit from bloods being taken during a flare.
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ShellyWelly
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Ask the Rheumy! Why did he check your eSR on steroids, wouldn't your doc GP do them now when your in so much pain, ring them my friend, don't wait and wish you had tomorrow! X
I've just managed to get an emergency appointment with my GP for later today and i'm waiting for a call back from my Rheumy's secretary. Thanks allanah x
So glad you took that step, let us know how it went?
Hi ShellyWelly,
Sorry you having such a bad time of it. Unfortunately, blood tests do not always reflect what a person is feeling or how much pain they are in. I went to a presentation on flares at the BSR conference and one of the things that came across there from a study, was that quite often people could be experiencing a flare but their blood tests (as yours did) came back normal. It is complicated. Hope you get some relief from the pain clinic when you go,
I would have thought it best for you to be med free before conducting any bloods. When my GP suspected RD she had bloods done after anti inflammatory & pain relief was out of my system to achieve the most reliable baseline for confirmation! It worked & was pretty high but even higher 2 weeks later when I attended a diagnostic clinic. Yes, I was in great pain with such stiffness & cursed her silently for putting me through it but was obviously the sensible thing to do.
That's what I think too. 4 months of Naproxen and halfway through a treatment of steroids which dramatically helped visible swelling and pain for a short time, is not the best time for bloods to be taken in my opinion.
Can the pain clinic order a new blood test i wonder? Interesting to hear your experience and I really do think I should have another test, just to be on the safe side.
You can only ask & explain you reason for asking. I don't understand why it's not general protocol if my GP thought it advisable. It stands to reason, no intervention + worst case scenario = correct dosage & treatment & should be the norm I think!
Hi Shelly - I do hope you've had some much needed compassion and support from your GP now. I agree that it's really important to get blood taken when off everything.
I remember being in a flare a few weeks before seeing the rheumy for a second time and having lived on Ibuprofen for several months. My GP got my blood taken just before I started a course of steroids and I was so upset to find that my ESR was only at 30 and my CRP at 19 - from the amount of stiffness and pain I was in (I could only just shuffle slowly) I assumed both would be twice this. My GP was really nice about it and said actually both were raised still and the Ibuprofen would have lowered the inflammation markers, even though I had stopped taking them the day before the blood test.
Anyway Palindromic Rheumatism isn't nothing - it is intensely painful and may still turn into RD so they will have to monitor you closely even if the diagnosis remains at PR for now. Txx
My GP was very reluctant to give me any more pain medication and was fixated on recent bloods coming back negative. Did eventually get some Tramadol though which helped massively thank goodness. He also made a terse comment about him not being my GP and that i'd seen him a lot recently....my own GP has been on holiday and is massively popular, so never has last minute/emergency appointments available and as i'd seen this GP previously, each time I ring and my own GP isn't available, they book me with this one instead.
Interesting to hear your GPs comments about your inflammation markers. I do want another blood test, but with it being (possibly) PR and be having OK days mixed with the bad days, it's a matter of getting it done at the right time, now I am not on any NSAIDs though, I really want a new test doing.
Hey it's always lovely to be called lovely! For what its worth I think you should insist on seeing your favourite GP rather than this other person, although fine that you got Tramadol and its working of course. Just book one way ahead with the good one and don't worry unduly about whether you are going to be symptomatic on the day or not. My rheumy always says that RD can fluctuate but it is when it settles that it puts our joints at risk. So if yours is still poly arthritis and travelling constantly your good GP will understand this and hopefully repeat the blood tests then and there. At the stage you are at I pushed to have them done monthly and asked for print outs. Man GP (best one) not always so keen but woman GP great re bloods as she's always curious as I am! Mind you my bloods are a dead give away of autoimmunity so I'm very lucky - but as you can see here many people's aren't. x
I have seronegative RA and my bloods always come back normal or close to , they don't always reflect the way you are feeling and the rhematologist should take this into consideration , hope you get some help soon x
I TOO.. have seronegative RA.... My blood work always shows either normal levels .. or DRAMATICALLY LOW levels on other things.. its frustrating because you feel like its an uphill battle going in because the numbers being "normal" but your body and joints telling you that you are at the EXTREME WORST! I do have some disfigured joints and recently had a SCHWANOMMA removed from my foot.. SO thank goodness they are taking a closer look now at everything going on!! My father has had RA since I was 13 and I am now almost 40 and when he does go to the doctor with me, they undoubtedly KNOW he is SUFFERING from it because he can barely walk and the nodules on EVERY JOINT he has are not only visible but about the size of a pea, sitting there on his hands, knuckles and even elbows ! after seeing him, they now KNOW that mine, even though its seronegative, is THERE , although not to the extreme!! SO much to say, but I will end there for now.. saying, newly diagnosed R.A. can be depressing and frustrating, but having the RARE form of the seronegative R.A. and being grouped in "only 2% of the cases", takes COURAGE , STRENGTH and every ounce of Optimism you have to start your BATTLE TO WIN and not let it define YOU ! THANK YOU JULIE and BECKS and EVERYONE OF YOU WONDERFUL, Fellow FIGHTERS for BEING HERE and BEING BRAVE and helping me Cope and take away my feelings of loneliness !! IT WARMS MY HEART and HELPS ME FIGHT! XOXO
thank you Thomas , it's flipping frustrating when I go for an appointment and see yet another doc. the last one said he thought the swelling was better , although he had nothing to compare it to and I had no signs of synovitis and my bloods as always were normal , they can't see how you feel can they ! keep on fighting !
Hello there, I too have always had zero negative blood results but that doesnt mean that your not in pain....
Are you Rheumatoid Factor positive? im not but yet im still being treated exactly as though I have, its very annoying you could be RF negative for years and then one day positive. I had to give up my job because of pain just couldnt get out of bed and the fatigue was awful too.
Before they diagnosed RA they said I had inflammatory arthritis, I would suggest looking up and reading as much as you can about being seronegative and having low ESR and CRP - no one but you understands your pain.....................
You make sure you stick to your guns and just to say I took to my rheumy a print out of seronegative RA and of course he couldnt argue.............
Thank you my lovely. I was thinking of taking a print off information about seronegative, but last time I mentioned that around 30% of people with RA have negative bloods, he was dismissive and just said "yes we know this". I think I need to be a bit more bolshy and realise that actually I know a bit more (in some cases) than your average GP about this area!
Thank you ThomasFPJ I think we all have to become badass fighters in the face of this kind of illness don't we? I appreciate your kind words and hope you are doing well this weekend? x
WONDERFUL POST !! My Rheumy has diagnosed me with Seronegative R.A. and Inflammatory Arthritis !! COMMUNICATION and STICKING TO YOUR GUNS, I ADMIRE YOU , BECKYBOOBOO! ! Thank you for Spirit and inspiration!
Sorry, just to add if your taking steroids or anti inflammatories your bloods are going to be low anyway......................
Sometimes I think that doctors feel some paitents make it up!
Wake up rheumatologists and read, this information is on the net why on earth should we have to prove ourselves when we honestly wouldnt want to wish this pain on our worst enemy. As you can read i have had a very negative time and it took almost 2 and a half years to get on the treatment and yes damage can be done within 2 years to your joints, again have a look at the information available on line, there is medication you should have called DMARDS to stop joint damage in the first 2 years.
Best of LUCK TO YOU !! I HAVE such EMPATY FOR YOU !! XOXO
I would just add to this that most rheumatologists do know what they are looking for and good ones should always consider symptoms over blood results . If you don't have synovial swelling that they can feel on examination then they will not be keen to get you started on cytotoxic drugs and that is a good thing!
So RD does show up very specifically to them and if yours is reluctant about giving a diagnosis then that isn't necessarily a bad sign, although I know only too well how tortuous it feels from the patient's perspective.
GPs are another matter entirely as they aren't trained in rheumatlogy and a GP friend of mine had never even heard of PR!
Very true Twitchy - it could be something entirely different (nerve damage or something) but I want to be satisfied and confident that they have been thorough in their investigations. Definitely wouldn't want to be on hardcore drugs for no good reason!
Lol, I told my GP about it and could tell by his reaction he'd never heard of it, he just looked at me and stayed quiet, so I took that as a cue to briefly explain it.
GP's have an awful lot of general medical knowledge but I wouldn't expect them to know the details of every obscure disease or condition, but it would seem that mine isn't even aware that seronegative RD exists.
Ah well, at least he gave me pain relief, which is something!
Also, make sure your rheumatologist has considered spondyloarthritis as well as RA - spondy is notorious for not showing up much at all on blood tests for many people which makes it a whole lot more difficult to diagnosis. it also relieves very well on both steroids and NSAIDs in most folk too.
I think that the spondyloarthritis is my back and pelvic area.. How do I ask to be tested for that !? What tests would help diagnose , do you know ?!!? I have ALL THE SYMPTOMS! THANK YOU in ADVANCE ! Much LUCK , LOVE and EMPATHY , MY FRIEND!
Same here Tommy. This whole thing started with a snowboarding accident and an injury to my back and my granny suffere badly with spondylitis of the spine, and my mum has arthritis in her hips, so I feel this is also an area I should be checked out for.
Luckily, i've asked for a second medical opinion and I am seeing a specialist in 2 weeks time who specailises in Seronegative AND Ankylosing Spondylitis. I won't be happy until I've seen someone who specailises in this area. I hope he tells me all my problems are from nerve damage which gives me one less medical problem to deal with and i've just started treated for the nerve damage.
Here's hoping! I just hate all the uncertainty. Are you able to find a specialist whose main area is spondy?
xx
I'm sure your rheumatologist will be considering all the different types of inflammatory arthritis including Lupus and Spondyloarthritis Shelly - even those with no bedside manners are usually pretty competent at their own specialist area - although Lupus and Vasculitis are much more rare than the others but easily as painful in terms of the arthritis. Nerve damage doesn't sound very likely! Tx
I went to the pain clinic yesterday Twitchy for the first time, and he is adamant it is no kind of inflammatory arthritis at play and is all down to nerve damage in my back from the fall. He's started me on Tapentadol and was very optimisitc this would at least cut my pain in half. I still don't understand how nerve damage would be causing my joints to crack, stick in place and pop all the time, though I do understand that nerve damage can cause joint pain. Grrr. Wonder if i'll ever be out of this limbo?!! x
I guess the main thing is that your rheumy is positing a diagnosis of inflammatory arthritis (PR is inflammatory, isn't it?). So often a diagnosis will change, but it's very frustrating if you have a form of inflammatory arthritis and are wrongly diagnosed with Osteoarthritis for example. And as I understand from possibly not enough googling, persistent PR is treated with the same drugs as other forms of inflammatory arthritis. So with a bit of luck you will be on the right path, one that leads to effective treatment, even if it twists and turns a bit. How long till you see that rheumy again? (I know you have said, but can't recall right now.)
Yes Pr is essentially the same as RA but it doesn't cause lasting joint damage. Symptoms are same, apart from instead of swollen joints, often the nearest tendon is swollen, and also symptoms are more transient.
It's rare so still very little research into it but some say it's an early form of RA (many with PR have it progress into RA), others say it's a totally separate disease. Who knows!
I have an appointment with a new rheumy on 6th November.
I know exactly how you felt when you received the normal blood results. I had a bad flare 4 weeks ago. I tried to brave my way through it in hopes that it would get better. After several days, my pain and misery worsened. I finally called my RA doctor. He immediately ordered blood tests. I was not taking any NSAIDS or steroids and although I am seronegative for RA, I thought sure my tests would show some kind of positive result. Nope. All were within normal range. I couldn't believe it. It is a frustrating thing when you can't prove how you feel with some tangible evidence from blood tests. My GP was one to dismiss my misery to OA, but fortunately I have found a wonderful RA doc who understands and treats my symptoms. I am so thankful. I hope you know that you are not alone in your suffering and I hope that you find a competent doctor who listens to you and helps you through this crazy disease. All the best to you.
Shareasmile, THANK YOU FOR YOUR POST and I have such understanding of what you are going through and empathy it ALMOST made me cry because I KNOW EXACTLY how you feel , EXACTLY what you are going through and THE STRUGGLE internally and emotionally !! STAY STRONG!! I look forward to your future posts !
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