Blood tests don't show a flare

My mum has had RA since she was 17, she's now 55. Blood tests have always seemed inconsistent with her condition. So I thought I'd ask you all if anyone else has something similar?

She recently was having a bad flare up and it was very visible, but her blood tests once again didn't show she was having a flare really at all. Those who know my mum in the past would ensure treatment still because this has been normal for her and she is as tough as anything never has a day off and soldiers on when perhaps she shouldn't. However, meeting a new doctor he is thinking of reducing her meds because of her blood results he thinks she doesn't need as much treatment. Yet she has been in agony over the last few months and knows her bloods never correlate with the realities of her condition.

So, does anyone else out there experience something similar? I know RA can have various strains and I'm just wondering if there are more out there who's bloods are inconsistent with their condition and how have they managed this when getting support from the Drs.

(I don't have RA, I'm over on the Fibromyalgia forum! But very interested to feedback to my mum) :-)

35 Replies

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  • Hi, my bloods don't seem to change much either but thankfully my ra nurse realises this and goes by how I'm feeling rather than results. What a shame for your mum and how lovely for you to take the time to support her

  • Hi Williby, thanks for your reply. Do you know if you have a specific strain of arthritis? I've told her to go back to her old clinic if she's going to be messed around. She copes so well and I will not have someone speak down to her and tell her she's not in pain when she is. Pain seems to be managed so poorly here. Very frustrating! Many thanks for your reply :-)

  • I get given a DAS score (disease activity score) and my initial diagnosis was aggressive but thankfully was brought under control quickly. Not sure about strain as such. Surely your mum's new doctor will have to listen to her concerns? Or change doctor? My doctor does not interfere with consultants recommendations thankfully. Does she have access to a RA nurse she could speak to? If I was your mum this would be the first person I'd contact. :)

  • my blood results showed i had the RA factor but no inflammation even though i had the pain swelling and morning stiffness that lasted a few hours,hope your mum gets sorted soon,x

  • Thanks flowers89 it's a new consultant in Cheltenham. Cheltenham does seem to have a bad rep. She was being seen at cannock and received good care from cirencester but lives in Evesham now. They didn't have her notes and mentioned reducing her meds due to blood tests, which worried her. I've advised her to consider seeing her previous team in Cirencester again if he doesn't treat her holistically and individually.

    Williby, mums was really aggressive and blood tests didn't show it, she used to bite toilet paper to break it bless her then saw another Dr who treated her regardless. She actually has never had a flare so bad since she had children which is interesting but her joints are mush on an xray. She has gradually changed and increased meds over the years and had operations on hands, wrist, feet and shoulders. Very interesting to know there are more out there with inconsistent blood test results with their actual physical condition. X

  • If your Mum could get referred to,Warwick Hospital they have some brilliant rheumatologist's & nurses there .

    I moved to the Cotswolds from London .& was very apprehensive sbout changing rheumies but I have been very impressed!

    On another slant is any one else really frustrated with the fact you can't just click on a spelling mistake on this site ...but hsvevto delete all....or is it just my iPad or me???

    I do hope yiu can sort something out for you poor Mum...I know how the pain can really get you down.

    Kathy

  • Not sure why u r having problems deleting mistakes Kathy, I can delete them fine without deleting it all. Maybe ask the moderators if there is something u need to enable or disable in your settings.

  • My iPad is a complete mystery to mee! I call the Apple help line & I don't understand the question let alone the answer ! No,probs I don't write on the site very much as I seem to be luvky with both rheumies & meds,

    Thank you for offering a solution - shame I'm too computer illiterate to sort it!

    Many thanks, Kathyy

  • I had this problem on my Asus Memo Pad for a good while Kathy but it's been back to normal now for a few weeks, thank goodness! If you want to contact the tech team just pm me & I'll root out the name of the person who kept me updated.

  • Hi Kathyfitz,

    You should be able to edit your post without deleting it all. What browser are you using? I know that there have been issues depending on which one you use. my colleague had problems with IE before.

    Beverley (NRAS Helpline)

  • No idea as to browser...my iPad was set up when I was given it & " I know nothing" about browsers!

    I just hoped it might be me being stoopid!

    Kathy!

  • Hi Kathy,

    Well things are easy when you know the answer. I think that if the problem persists then to contact HU support through the help button and ask them.

    Beverley

  • Thank you Beverley....I was particularly frustrated with this Tablet yesterday as it started the day by not sending photo attachments & then finding it wouldn't just click in a spelling mistake was the final straw...i'll get my techie to sort it!

  • Hi Kathy, do you mind saying who you see at Warwick?

  • I don't just see one - they are all excellrnt. Hope your Mum agrees if she god there.

    Kathy

  • Hi, my blood tests have always been borderline (whatever that means) my consultant treats my symptoms rather than the blood test results. I believe its sero-negitive RD.

    I hope your mum gets the treatment she needs.

  • My doc treats my symptoms not my numbers. When u go next time ask shy they suggested lowering drugs and their reason why. I suggest also taking a pain diary, how sore, when , pictures of the swellings if any etc and show them these. If you are still not happy ask to see another doctor. She is going to be with this doctor a long time and has to trust them. However I initially wasn't keen on my new Rheumy but then realised the guy is a genius! X

  • Mum is so busy she'll never do this! I know it's a good idea but she works very hard and won't find time for it. I've tried doing it with my fibro but didn't like focusing on it every day to write the diary. It would be very useful though I agree, mum is no wall flower she'll stand up for herself with the new consultant! Just very interesting to know she's not alone and she can argue her case with more conviction knowing she's not the only one who's bloods don't reflect her pain.

  • Yes, just an idea if she thought like I do sometimes " they don't believe me" lol. Good if she stands her corner she should be fine x

  • Blood inflammatory markers (ESR or CRP) are definitely not specific for inflammation (can be raised in other conditions), or reliable indicators of inflammation, so no, its not unusual to have normal blood markers and still have uncontrolled disease. In folk who do show raised blood markers it can be a good way of assessing disease control, but if you don't show raised blood inflammatory markers then they just have to look for a different way of assessing disease control. Only think I can suggest is that your mum insists that she has never had raised blood markers, so they aren't a reliable way of checking with her.

    I have an idea that spondyloarthritis is a bit less likely to show raised blood markers, and that this may be because of the location of the inflammation (enthesitis, rather than synovitis), that means that whatever it is that affects the blood results doesn't actually get into the bloodstream as easily.

  • You can't and shouldn't just go on bloods alone. Drs are supposed to go on what they see and touch as well. I've had RA for many years and was admitted to hosp because foot surgery I'd had had got infected and the scars completely dissected and exploded on my bathroom floor!!( at the time it wasn't funny but it would make a good cartoon, I'm not going into details!!!) I was really ill my bloods came back from the lab absolutely normal. No raised crp nothing, sister on ward doubled checked with the lab they were my results, because I was so ill. No they were mine. My surgeon said he saw my foot and the the bloods didn't match the clinical picture. I was on 2 lots IV antibiotics and oral dose and after a few days was back in theatre having debridement of dead tissue and further corrective measures.

    Spoke to my rheumatologist and she said it's not uncommon for bloods not to have elevated markers and that you can't go on bloods only you have to look at the patient. If you've got a large red swollen knee, ankles whatever you go on that. Sometimes I think we have to remind doctors we're not a set of numbers and we usually know when something's not right.

  • My mum has had her feet operated on also and one did get infected, sounds pretty similar to your experience actually! Yeah, perhaps Mum is over worrying. But he did say he'd see her again in 6 months and she's really bad right now. She did not get a good vibe off him at all. I've passed on these messages and she's found it really interesting and has given her confidence to be sure that bloods are not the only thing to go on and to stand her ground a bit more on it.

  • What an awful experience for you Susiebee31. This obviously isn't acceptable & an example at the worst end of why I disagree with feet not being included in the DAS 28. I don't necessarily expect my Rheumy to check all the little bones, it's well known how time poor they are but I do think it's unacceptable for mine to tell me that she never examines feet given my problems. She ordered x rays for my first appointment so is aware of erosion & that it's where my RD first presented. Unsurprisingly I continue to have problems, regularly needing to have corns removed from the soles of both, very uncomfortable.

    I do hope you've not sustained any lasting damage & there's no need for further operations.

  • I think it is always worth taking photos when having a flare up. It shows that the joints are swollen and red, and seems to convince the rheumy team better than words.

  • Yes, I have the same problem, and it's very annoying when the Doctor looks at me saying your bloods are fine, and yet I have so much pain in my hands and feet. My meds have not changed in 13 years, and eventually I moved to another hospital and

    am waiting forthe outcome of all the new tests that they took.

  • Another thought charlie9.

    Has your Mum had a CCP blood test ...I understand it's a much more useful indicator that the normal Rheumatoid Factor test?

    For me it gave my rheumie information that led to a change in my meds & an all round improvement.

    Kathy

  • Hi

    I have had sero neg RA for over 30 years and a lot of my pain comes from mechanical damage rather than inflammation and this might be one reason for your mum's increasing pain/flare ups. Is it possible that she needs to see a surgeon to get an opinion about the joint areas affected?

    Ailsa,

    CEO, NRAS

  • I have sero positive RD which is aggressive, however my blood test are never consistant with my disease, my esr right now is at 2 but I'm in agony and have been for months, everyone is different and a good Rheumy shoukd know that bloods are not always a good marker of how someone feels but a guideline, my disease activity is high but my bloods are low, hope this helps

  • Iain...look up CCP blood tests. I don't understand the mechanics, but I was very poorly with all sorts of symptoms & when I tested over 110 when the marker is 11/12 it motivated the medics to investigate further & now I am on different meds & feeling so much better. I too have Sero positive RA & was diagnosed 15 years ago & thankfully have very little joint damage . I was on Mtx for years with great success, but suddenly it all went pear shaped & the CCP test seemed to be the test that the rheumies acted on.

    I hope your pain eases up.....I never knew such pain existed & I am now so grateful it is "on hold" if not banished forever.

    Kathy

  • I've mentioned this to mum, she's not sure what tests they did but will look in to this one in the future, thank you x

  • Yes me, my bloods are ok whether im in a flare or not. I hope your mum gets well soon x

  • Like a few others I am constantly at logger heads with my rhuemy. Got appointment February see how that goes or im moving consultancy to anywhere, ive had this 13 years nearly and now ive had enough of being not treated correctly because of bloods.

  • I hope you get it all sorted and are cared for better soon x

  • My bloods don;t show inflammation either. Was very lucky (or unlucky lol) to have a flare in my feet during a visit to my rheumy nurse and she said "You are one of those who don't show the inflammation in your bloods even though I can see the swelling and inflammation in front of me". I had blood test 2 days previous to seeing the nurse and was going through the flare then too.

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