bloods are complicated: I had a phone call from... - NRAS

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bloods are complicated

VeronicaF profile image
10 Replies

I had a phone call from hosptail today after ringing 48 hours helpline

last bloods done in august, I was on the s drug then but stopped it because I really wasn't well on it, and my pain was hardly there afterwards I felt I needed a break off the drugs

I was on a striked diet salads and veg fish and chicken

I even said I felt it had gone.

lately not too good. so having bloods and going to be seen again

anyway I said out of interest what was my bloods in august she said very high RA but low C--- a 5

but she said there is no mistake you have RA

can that be when your c levels are low? of course they might be high now me being not so good, but is that still right if they were still low?

I have had CT scans that show it in places.

but I am asking about bloods

hope I make sense?

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VeronicaF profile image
VeronicaF
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10 Replies
nomoreheels profile image
nomoreheels

Are you meaning your CRP value? If so going off my lab anything below 6 is acceptable so you're only just below normal but another lab may consider 3 to be acceptable so you'd be over the normal value. It would be helpful if you know the recommended values your lab works off. One thing to bear in mind though your CRP indicates the acute phase of inflammation, inflammation that's happening now. You will also have had your ESR taken, this indicates chronic or longer term inflammation. Unfortunately neither give the whole story, they're only pieces in the jigsaw. So, they're not reliable to work off on their own, certainly only having the one value (CRP) isn't. I rarely have high values, even when there's no doubting I've had a flare though it's not always understood or accepted by my team.

Your Rheumy says there's no doubt you have RD but are you doubting her? She's said your August bloods showed very high RF, the other tests & imaging confirm (probably including anti-CCP which is a more sensitive test than RF). You know that RD doesn't stay still, it has peaks & troughs, we flare then the disease settles down for a bit but unfortunately it doesn't mean it's gone. This is why we're prescribed the meds, to try to control the peaks & troughs, trying to keep the flares from bubbling to the surface & causing joint damage.

My guess is when you have your next set of bloods both your ESR & CRP will be higher. With the help of your DMARD they should have come down somewhat at the following bloods.

Following a sensible & well balanced eating plan is helpful, avoiding any foods you know cause you joint pain is the key really, good fresh food, veg etc. At the stage you're at I'm not sure a strict diet is the best way forward. Just make sensible choices & try to keep your weight a reasonable one for your frame & height & you shouldn't go far wrong. You need to know if it's the meds that are working so now you've found out that the diet you chose wasn't right for you take advice from your Rheumy & let's see how you respond.

All the best.

oldtimer profile image
oldtimer

It might help you to understand the course of Rheumatoid Arthritis better if you have a look at the NRAS website especially the pages about being newly diagnosed.

It does look as if being treated energetically at the first signs of RA helps to prevent long term damage to joints and later disability. So it's important that you think about treatment now.

Although some people find that particular dietary exclusions help to prevent flare-ups, it is obviously sensible to have a good diet to make sure you have enough of the essential items. But there is no good evidence to show that diet will control the immune process by itself.

It is common that when first diagnosed we try to pretend to ourselves that it isn't true that we have a long term illness, so we can sympathise with your feelings!

VeronicaF profile image
VeronicaF in reply to oldtimer

I have lost loads of weight, I was 10stone 13 and now just under 9st

I only eat veg,all veg, fish, chicken, salads a gluten free chicken curry once a week, have the odd wholemeal bread

I hate chicken but have to like it

have almond nuts oc

no fats at all except milk in my tea, but drink lots of tea

I have 3 types of problem

stiffness more in mornings, pain in places it is or has been and the sharp burning sort of pain where it flutteres about it likes my toes and feet with that bit

I know when its coming as get hot flush

the mornings are a big pain but once I get out to sort out little horses it really helps but have to push myself

love to get up feeling fit and well instead of feeling a 100 years old

and love to eat food with out thinking I will pay for it if I do

dbestdeb profile image
dbestdeb

My bloods are always normal, even when I feel my worst. The only one that shows how I feel is the Vectra DA test.

helixhelix profile image
helixhelix in reply to dbestdeb

Which isn't available in the UK for those who wonder why they haven't had it.

dbestdeb profile image
dbestdeb in reply to helixhelix

I didn’t know that. Sorry.

helixhelix profile image
helixhelix in reply to dbestdeb

No need to be sorry! It's just to make clear that our doctors in the UK haven't been keeping something back when it's just not available.

helixhelix profile image
helixhelix

If your blood test in August was while you were taking drugs, then they will have lowered your CRP reading. And even if you had recently stopped Sulphasalazine it can take a while for it to rise after you stop. And even anti-inflammatorys like ibuprofen can have that effect.

The blood tests we are given can be divided into sections. So things like the RF or anti-CCP test are more diagnostic and tend to stay pretty stable in most people (not all). Once I was diagnosed these have never been tested again.

Then there's the inflammation tests like ESR and CRP which fluctuate depending on how you are that day. Apart from when I was diagnosed and was virtually bed bound with every joint swollen, mine have been pretty normal ever since even when one or two joints flaring.

VeronicaF profile image
VeronicaF

my RF blood test was 289 and still showed that in august but my crp in august was a low 5 but I wasn't feeling in that much pain when that was taken

I even joked saying has my RA gone away as I felt hardly any pain at that time, that's why I didn't want anymore drugs for a little while

but now since my elbow I am realising things are still going on and its effecting my limbs

nomoreheels profile image
nomoreheels in reply to VeronicaF

Your RF whilst it seems high wasn't particularly high. When I had mine taken again when I signed up with my Rheumy here in the UK after 3 months off all my meds my RF was 1280 (I've heard it be higher), my ESR 16 & CRP 3 yet I was a mass of inflammation & pain. It just goes to show how we're each different in presentation.

It does sound as though it's creeping back so the sooner you can start your meds the sooner you can get back on track & the morning stiffness will ease some, your elbow too.

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