Early RA: Hello, I'm in a conundrum with blood tests... - NRAS

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Early RA

liquoricet profile image
15 Replies

Hello, I'm in a conundrum with blood tests which frustratingly were only taken because I wanted HRT!

My CRP is raised but reducing (22-18-15) & ESR also a bit high but coming down over 3 months. I have had an abnormal Anti CCP (10) & above 7 is raised. The RF test was negative.

I am generally well but do have foot pain in my heel and currently left elbow pain.

My doc has been investigating my liver (not sure why) but I have normal bloods and an ultrasound has come back clear.

What does the anti ccp mean? Could it be early RA?

It's all a bit odd as I'm not feeling particularly unwell!

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liquoricet profile image
liquoricet
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15 Replies
Gottarelax profile image
Gottarelax

Hi Liquoricet, I'm fairly new to RA having been shocked at the diagnosis about 8 months ago. I'm still slightly in denial! I was pretty crippled but was not expecting RA because I though that was hands and feet and there I was with hips, shoulders, elbows, knees... Anyway I had an anti-CCP of 18 I think and negative RF. I was sent to a consultant who said my finger joints were 'spongy' and with everything else it was most likely RA so here I am on RA medication (Methotrexate) wondering how that suddenly happened from being pretty fit this time last year. Anti-CCP is, from what I read, pretty conclusive for RA whether current or likely to occur in the future. My experience is that RA isn't just pain in the joints (as if that's not enough) but also general 'flu-like' feeling where I just want to collapse on the bed by afternoon and when the pain lets me I could sleep and sleep. I also experienced night sweats (not menopause as the HRT I'm on is fantastic and I can't put my finger on it but they are different) when I wasn't on medication. It could be what you put down to menopause may in part be RA induced. I hope that your GP is on the ball and you get to see a consultant in good time.

liquoricet profile image
liquoricet in reply to Gottarelax

Thanks, that is helpful. I think I'm going to emphasise the slight joint pain/tenderness I'm getting. My foot actually hurts quite a lot in the morning until I've woken up and I'm also experiencing pins and needles in my arms at night and hip achiness.

She dismissed the anti CCP result as it wasn't a high number and she couldn't see any swelling in my hands but I am starting to think it should be investigated a bit more thoroughly.

I'm getting (yet) more blood tests to see if my CRP level is normal next month. There are auto immune diseases in the family (sister has type 1 diabetes and aunt pernicious anaemia) which I'm guessing makes it more likely...

Madmusiclover profile image
Madmusiclover in reply to liquoricet

GPs are just that! Ask for referral to rheumatology. X

Deeb1764 profile image
Deeb1764 in reply to liquoricet

RA manifests in many forms so get a referral and don’t budge on this as the earlier you are seen the quicker the confirmation. If you read this site you would see so many varieties of this condition that a basic GP check is not enough. Keep a diary to show what is happening and how you feel. Don’t let them put it all down to the menopause

helixhelix profile image
helixhelix

There are quite a lot of things that have one or more symptoms in common with rheumatoid arthritis - psoriatic arthritis, haemochromatosis, sarcoidosis and other forms of polyarthritis associated with various connective tissue diseases including systemic lupus erythematosus and primary Sjogren's syndrome just for starters.

Psoriatic arthritis for example is seronegative, amd doesn’t necessarily have skin involvment - especially to start with.

I think you just have to keep asking your doctor questions, amd keep a diary of symptoms.

OldTed60 profile image
OldTed60

I think the specific antibodies such as anti CCP are a fairly accurate guideline and shouldn’t be dismissed - especially in conjunction with menopause - which is often when these rheumatic autoimmune diseases begin. The point is to pick them up early before damage is done to joints etc so why is your doctor ignoring a positive result having bothered to run the antibody panel in first place?

As Helihelix says there is often much overlap. I was diagnosed with RA when my menopause was already well underway many years ago. My rheumatoid factor was raised but I was anti ccp negative. I had high inflammatory markers and pretty soon after onset of bilateral joint pain came burning nerve pain in feet followed by Raynaud’s and sicca dry eyes. I was put straight on methotrexate and sulfasalazine by the rheumatologist.

But due to normal/ negative immunology I kept pushing for more clarity and finally got rediagnosed with sjogrens (primary secondary distinctions have thankfully been removed now and sjogrens is always a stand alone disease in its own right whether or not accompanied by others such as RA)

Finally now I am ANA and first time antibody positive for a much rarer autoimmune disease, systemic sclerosis/ scleroderma, which was brewing back at the start 12 years ago. I also have overlapping sjogrens, inflammatory arthritis, Myositis and very long term hypothyroidism.

My one regret now is that I didn’t push harder for HRT as well as the RA/ autoimmune meds. I do get it topically in pessaries but the reluctance to give it to me in pill form 12 years ago means that I now have osteopenia/ borderline osteoporosis. So I wouldn’t let the RA pointers put you off course with getting HRT as well.

medway-lady profile image
medway-lady

It could be but equally it could be you have a bug as even a cold will push up the CRP or a splitter in the hand can do it it just means inflammation somewhere. So firstly don't panic and ask for a repeat blood test and go from there. Don't fret as caught early the treatments for most people are good and we lead normal lives. Its very easy to link every ache and pain with RA and indeed it could be that but be patient and if things get worse then speak to your GP again but if not the get another test in a couple of months. GP's re generally good at diagnosing RA and a wait and se approach is cautiously good.

StormySeas profile image
StormySeas

I can't advise but just to say I had all the blood markers for RA long before I was finally diagnosed.

Looking back I had symptoms for many years - flu-like debility, exhaustion, joint pain etc - plus several other AI diseases a family history of RA.

Even though I was frequently asked if I had RA by doctors at the eye hospital, my GP never picked up on it and I never managed to join up the dots myself. I now know that RA responds well to early treatment, but I was never aware of this, nor did I know the full range of symptoms and how it presents itself.

You might or might not have RA but I'd keep a diary of your symptoms at least so you have a good picture of what's going on, and don't be afraid of requesting a referral if you think you need one.

liquoricet profile image
liquoricet

Thanks for your advice. I think keeping a diary is a good idea. It'll be interesting to see if the CRP levels have reduced again next month. I will ask my GP about the abnormal Anti CCP result.

I've now been prescribed HRT which has helped with general aches and pains and night sweats. I didn't realise that menopause was another factor in RA.

Helen-NRAS profile image
Helen-NRASModerator

Please have a look at this publication on our website. You can download it free of charge or we can send you a booklet if you prefer. nras.org.uk/product/blood-m.... Kind regards.

liquoricet profile image
liquoricet in reply to Helen-NRAS

Thank you

in reply to Helen-NRAS

I tried but it won't download the free copy.

Helen-NRAS profile image
Helen-NRASModerator in reply to

nras.org.uk/product/blood-m.... If you Click on Download, then add to bag. Then go to Basket, then Proceed to Checkout and add your details and then Place Order hopefully that will work for you. Let me know if you have any problems. Thanks.

in reply to Helen-NRAS

Oh, thanks Helen. I don't want to put in my details, will have to leave it.

Your inflammatory markers are comparatively low; mine were in the hundreds when I was first diagnosed. It may therefore just be a bug.

Your liver function will be being checked to see if there are any issues there.. ruling things out is as important as ruling things in

Keep a diary of any symptoms including pain and fatigue. Get your bloods redone in 6 weeks to see if anything has changed.

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