Hi,
I was diagnosed with RA in 2010, and have been on most of the medication since. But, my CRP is always low, yet I cant bend my fingers, my feet are painful, and my joints are red and hot. My consultant only ever looks at the CRP so I am on no medication at all and have been like this for 4 months. Is it only a high CRP that shows inflammation??
No. My blood tests rarely show inflammation, but I have widespread swelling, stiffness & pain + looks like now have damage in feet & hands. I will shortly have Rheumatology appointment, but GP surgery already agreed to 2nd opinion at a different hospital unless they considerably increase what they are doing. Which is better than you as am on Sulfasalazine, but minimum dose with no follow up for 6 months & no real help when contacted. I cannot wait to change hospital & am very grateful to the prescribing nurses at my GP surgery - they are my support, not Rheumatology.
Hi,
I was diagnosed last year wit RA. My GP used both blood tests and x-rays to determine what the issue was however she was already convinced that it was RA just by looking at my hands. She sent me to an RA specialist and he got me started on treatments right away. So if you consultant is only looking at a single blood test I'd ask for the x-ray as well or else go find another doctor that's able to and willing to help you.
Hi....I think Luv4Hockey has explained it well and this was exactly my experience too. The only thing I would say is try and push for an ultra sound scan of your hands if possible as an X-Ray will only show joint damage not inflammation...but I may be wrong!! Good luckz
I too have never a high CRPs. I am RF and anti CCP positive. The last Dr I saw at clinic said I couldn't be in pain because my CRP was low. I am on mtx but still have stiff swollen painful fingers and toes. All the other Drs and clinic nurses I've seen have had a different attitude. I would definitely get a second opinion. Good luck J xXx
Get a second opinion. I didn't & I'm paying the price with damage to my joints. Now I struggle with damage pain & inflammation xx
Hi Rachel,
Did you mean that the damage on your joints is because of you didn't take the RA medicines earlier?
Thanks
They didn't believe my symptoms as my CRP was low. I was on medication & it wasn't working. A different hospital has told me I've suffered damage to joints because my condition wasn't treated effectively.
Oh! Sorry to hear that. May I know how long have you been suffering from this disease before it damage your joints?
Hi,
I am the same. My bloods do not show my inflammation and I have an erosive form of RA. In order to judge my level of inflammation my consultant uses ultrasound scans. I am taking methotrexate, sulphasalazine and Humira. It would be worth asking your consultant to ultrasound your joints.
My crp is low,last blood test it was 8 yet i too still suffer and have swollen fingers. My nurse says she has seen worse than me,but i said to her maybe,but these are very swollen for me as i have very thin bones in my hands.xxxx
I experience flares when my CRP approaches 2. I think they need to reconsider what is "normal" or you need to have a doctor that knows what is normal to you! We need to be our own advocates. We are more than just our labs, we are people.
Absolutely, Karen. The DAS tool description in the UK is good to understand how RA is assessed but it is not inclusive (doesn't include foot problems!). Getting a second opinion is not always possible so you have to work with who you have. We definitely have to be our own advocates. I have started requesting the physician notes and then I see what they are documenting then I write my summary and submit it to go on my file. I feel better even if they only consider the labs! Cheers Doreen
Good idea. I'm not sure if doctors here would share their notes. Hilariously, mine gets her secretary to type them out afterwards and they always have typos. Usually it's the two of us trying to translate the typed notes. That is, when she gets them typed. When she doesn't, she usually has trouble keeping track of what page she's on... I feel like you should have a minimum skill level when it comes to organization/neatness for that profession, but beggars can't be choosers...
Hi Karen
In Canada we have access to all our health records via the Freedom of Information & Privacy legislation. Because 'self-management' is promoted in the health industry (we used to call it the the health CARE system) we have to as you said take initiatives and advocate for ourselves. Not easy. Hope your fall is going well. Cheers Doreen
Thanks Doreen. I am in Canada too, so I guess those are MY rights you are talking about! There you have it, what a fabulous thing this forum is! But then, if her secretary can't read her handwriting, I doubt I could either. Thankfully my GP is super about printing out my lab results at no cost to me, so I get to monitor things on the basis of My Normal. 
There are two indicators of inflammation usually taken, ESR & CRP. I'm seropositive & on meds & when I'm doing ok mine are both usually in single figures so if they rise into the teens or as they did recently higher my Practice Nurse pays particular attention, phones me & asks me to speak with my GP. This last time she requested an urgent appointment with my Rheumy & my methotrexate dose was increased & was directed to increase my NSAID from alternate days to every day. It was a locum Rheumy I saw who didn't think my inflammation markers were remarkable which is true except he must have recognised that it was unusual for me so there was definitely a need to amend my meds.
I don't quite understand why your Rheumy was happy to prescribe meds until recently, particularly as you have physical evidence & to my mind no Rheumy worth his salt relies on bloods alone to determine whether you should stop your meds. Did he explain why he decided this course of action, apart from your low CRP reading of course? Has he released you from his care? Is he thinking it's something else causing your problems, OA maybe?
I would make an appointment with your GP & see what he/she makes of it & whether it would be worth him/her writing to your Rheumy requesting his reasons for not treating you or for you to be seen as you're in a poor way now without your meds.
I hope you get answers & the help you need.
I also had low CRP but bevause I wasn't responding very dramatically to Naproxen and sulphasalazine, they put me on Humira anyway, and.So Iwould suggest that you ask for biological treatment anyway if it persists. From feeling like I was working with two sprained wrists, I was 90% better in 2 weeks. Since then one doctor bizarrely has said, it must be rheumatoid, that's why they've given you Humira! Since when did choice of treatment prove a diagnosis? A Bonkers thing for him to say!
I too have never had a high CRP reading, apart from twice when I had other health issues, they have always been in single figures. When I was first diagnosed they took Xrays and looked at bloods and diagnosed sero-negative RA, which as far as I know does not show in the blood tests.
I have been on mtx and then changed to sulfasalazine since diagnosis; it does sound like you need to speak to someone as there is something going with your joints.
good luck
CRP is a short term measure of inflammation and ESR is a longer term measure. However, both are just a guide! Any Doctor who only considers these markers is a moron! Get another Doctor.
I was in full-on flare with a CRP of 2.4. Normal for me is under 1, even though "normal" is considered anything under 8. I don't think it's the only marker of inflammation, but I also think that people need to look at the person, and not just the lab results. Clearly if your joints are inflammed, you have inflammation. How irresponsible of your consultant! I hope you are able to get help soon.
My old GP practice told me they wouldn't take my CRP as part of RA monitoring although occasionally I had it done in hospital. At first it was around the 19-21 mark and then after taking MTX and Hydroxy it came down to around 12-13 so they told I wasn't flaring despite me being very pained and stiff at the time. Recently with pneumonia, pancreatitis and a severe wound infection it soared up to 160 - but but is now at 5.6 despite me having more joint pain and burn than I had when it was 160. ESR is much more reliable for me but my new GP tells me the lab won't run it for RA. I guess if it starts quite low for me now with a new rheumy they will realise things are bad for me when it gets up to double figures?
Hi my crp lecvel is around 13 tested every two weeks, I wake up most mornings stiff as a board , but I went on the canal for a week( just got back) and I never had any pain I my joints at all . But when I got home it all came back weird.... maybe it was being on the water
Hi my crp is very low im sero positive anti ccp, had x ray on hand and feet when diagnosed last year and there was no erosion at all but have swelling inflammation and burning feeing in ankle, wrist and hands puffy and swollen and am in lots of pain at the moment have been on Hydrox for a year with metx added this month hope you get sorted soon,x
I have palindromic RA. My blood levels are rarely raised. Thankfully my consultant and nurse don't just use these to base treatment on. they deal with my presenting symptoms. I did have increased levels once when I was in crying agony just before being diagnosed and this contributed to my diagnosis.
My mums RA is quite advanced abs she's on mtx but like Me rarely has raised blood markers.
Xx
Thank you all for your advice. I am going to ring my GP in the morning and ask for a referral to another hospital. I cant forget how the consultant made me feel, sitting there running his finger across the computer screen and saying you have no inflammation because your CRP is low. I was close to tears when I left the room. Now on painkillers only and my fingers are nearly double their normal size, my feet are unbearable as are the rest of my joints. Your support has been amazing, many thanks.
CRP
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CRP and meds
ESR? CRP? PV? ...What’s it all about?
