Ccp blood: Hi, I have now discovered my ccp was 600 how... - NRAS

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Ccp blood

Vonnie10
Vonnie10

Hi, I have now discovered my ccp was 600 how does this effect my outcome with my rheumatoid as I recently put a post up about how my RA effects me, the comments a nurse made, I was just wondering what people think ?

27 Replies
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Is that an unusually high number? My Anti-Cyclic Citrullinated Peptide Antibodies test was 35.0 U/mL and the doctor was concerned because he said it was high (for my test, <=6.9 was positive). So he wanted to start me on disease modifying drugs immediately.

I hope you find your answers <3

Hidden
Hidden

I have learned over the last 3 years that different labs use different calculations. This can be very confusing to the layman ( people like us who don't work in a lab) ...Anyways, with many different labs around the world using their own calculations means many different "normal range" numbers. You need to find out what number is the "normal" range at your lab. At my first lab, the "normal" number was 10 or under....At the lab I go to now, anything over 3 is dangerous. As of last monday, my CRP number was 1.3 and my rheumy says I might have to restart mtx if it goes up to a 2.

xxxxx PS I did revise this reply. I originally replied "....last monday, my CCP number was 1.3.." I should of replied "...last monday my CRP number was 1.3..."

sorry for the mix up in letters

helixhelix
helixhelix
in reply to Hidden

Anti-CCP or CRP? I only ever have my CRP taken regularly, as having now been diagnosed the docs don't bother with anti-CCP any more.

Vonnie10
Vonnie10
in reply to Hidden

Our lab normal result is 6 I know mine is high 600 the nurse told me anyway suz lab result don't always mean everything you also have to look at the overall picture as well me the patient . You can have all healthy bloods and be dying, it's doesn't necessarily go hand in hand. Mine maybe high and I maybe doing great who knows . What will be will be. I'm not worrying about what could happen it may not ever happen.

Also different units of measurement. Cheshcat's U/ml is very different (by a factor of 100 I think?) from my lab's mmol/dl. Mine was 350 at diagnosis, and over 20 was considered positive.

Vonnie10
Vonnie10
in reply to helixhelix

Helix the rhem nurse said mine was massive and I will have problems I'm destroyed now after my night shift hobbling home .

helixhelix
helixhelix
in reply to Vonnie10

People do say that if you are sero-positive, ie have a positive anti-CCP level, then you are likely to have more aggressive disease. However many people on here are sero-positive and like me have a disease that responds well to drugs and can be controlled so it hasn't proved to be aggressively damaging.

When I was first diagnosed I heard the same and was terrified. I was also in huge pain and things got worse very rapidly. However, I'm fine and have been in remission more or less for years now. So please don't let what the nurses said weigh on your mind as it really, really may not happen.

Vonnie10
Vonnie10
in reply to helixhelix

I know I'm just suffering right now just hope I get sorted soon thanks helix

Vonnie10
Vonnie10
in reply to Vonnie10

Bed now m destroyed

Vonnie10
Vonnie10
in reply to helixhelix

Helix that's all I want is to get it in remission at the present moment it's raging in my body it's a damm nuisance more than anythink.

Hidden
Hidden
in reply to Vonnie10

I too was destroyed. I went from a healthy young woman to a woman suffering with uncontrolled high blood pressure. Apparently my left ventricle became enlarged due to uncontrolled inflammation. Scary stuff... It still scares me...I know how you are feeling..... Please listen to Helix's words of wisdom. She has suffered with RA and has come out the otherside....So will you.

Vonnie10
Vonnie10
in reply to Hidden

How awful the things that go on in our body's I'm happy your doing better.

Vonnie10
Vonnie10
in reply to Hidden

Hi suz.I had a appointment with my GP my numbness and my foot keeps giving way he said it's all the rheumatoid with me feet He wanted to inject into my ankles but I will wait until Tuesday I see the rhems. he thinks it's carpel tunnel syndrome in my hand sending me to a hand specialist funny enough tho he said I've to look after myself which I do try and do don't smoke try and eat healthy it's impossible at the minute to do much of anythink I'm scraping by right now. My Doctor said inflammation so high, it can cause heart issues, scary stuff but I'm not worrying about it as it may never happen. Easier said than done. So is this how they discovered your heart issue because of you blood pressure?

Hidden
Hidden
in reply to Vonnie10

I had 2 abscesses for 10 years. My abscesses where caused by my dentists incompetent work on both of my root canals. She failed to remove all infected roots in both root canals. This caused wide spead inflammation. Thus heart problems & high blood pressure....and possibly symptoms mimicking RA.

cheshcat
cheshcat
in reply to helixhelix

Thank you! This helps me too. It's hard to figure out all these tests they give us. Sometimes I see why they didn't use to release all these numbers to us, now they are all on my patient portal.

Bless you, Vonnie. I'm working on being really lazy about such things. I'll bother to worry about stuff as and when I have to and not before. It's like 'regret', a huge waste of time. "Shoulda, woulda, coulda' are all drains on energy I simply can't spare. It may be time, however, to start thinking about what you could do to make your life easier. Just a thought. Huge hugs

Jan

Vonnie10
Vonnie10
in reply to Gnarli

I know thank you 😊

Vonnie10
Vonnie10
in reply to Gnarli

Your so right I don't worry persay I don't sit here and frett what will be will,be it's out of my hands at the end of the day, I will just carry on as normal and if that day comes I will still carry on I do wonder if at times it's best not to know things but Ive got to be my own advocate now , and get the best treatment to get me back on track.

What's important here Vonnie is you need to know what the Lab where your bloods are tested are using measurement-wise. Also that results on their own aren't helpful, each form part of a jigsaw, including physical examination, on their own they aren't helpful to determine what's going on. Bottom line really is it's impossible to know what your 'outcome' is or would likely to be as your individual response to meds can't be predicted. Best not to get worked up over it anyhow, that won't be helpful for you really.

I understand all that it's just the drugs aren't working benepali is not doing it for me, thanks for the kind words.

Are you due a Rheumy appointment any time soon, not a nurse appointment? If not then I would request one, I would think until you can get a straight answer from the horses mouth you'll not settle & again, worrying won't help you. I mean this in the kindest way, I don't think you'll settle until you're told the absolute truth about your prognosis. If it's of any consequence I don't think the nurse who said what she did had any call to & I'd be tempted to tell your Rheumy what a concern her actions have been to you, whether it's the truth or not, it wasn't her place. x

I'm seeing the nurse next week, again I shall see what's said,this treatment is not working,I am destroyed in work,hobbling around, after two long night shifts and pay for it after,alls I want is treatment that work, sometime at clinic I think they think i over exaggerated, that test what they do will be all tens, Ive got stiffness and pain all day everyday especially after I've been in work it's worst.Old dears in work are nurse pull me up grab at my hands I'm like noooo, love my job I've worked there for 25 years I was of for four months been back eleven weeks now, such a struggle .

I just need a treatment plan to get this manageable I will cope with the what ifs and maybes.

The nurse who said my outlook isn't great wasn't been nasty, this was my second ever visit to the rhem team I suppose she was just looking at my bloods. Been so high and my severe inflammation and not me and the result in front of her like most do, I'm a fighter, I could never end up disabled I was just seeing on here who did and who didn't and overall 90% didn't I'm in the higher % that won't. Everything crossed.😀

I'd explain how it's affecting you to the nurse as you have here with us. I don't know if Benepali has an immediate action or if it has a lead up time but it has been reported here that others who have been on Enbrel (etanercept) & switched to Benepali have found it's not as potent. A biosimilar by definition is a medicine which is highly similar to another biological medicine already licensed for use, the two products are similar but not identical. Maybe being so newly prescribed nurses are unfairly relating the response of patients on Benepali to Enbrel? Either way it's either not working for you yet, you're not responding positively to it. This needs to be addressed.

I understand that the nurse wasn't being nasty, still I don't think it was her place to say what she did or moor that matter how she said it. I believe in med profs being up front but to put it bluntly she doesn't have a crystal ball does she?! We form a relationship over a period of time, in that time they should be in a position to assess how to relay information. Clearly the way she said your prognosis isn't great & the other saying you will end up disabled, even if it is fact, has played on your mind. Being blunt is one thing, being unprofessional is another, that what I mean.

It's in your favour that you're a fighter, you show em girl!

Hi heels hope your doing great today, you know what a friend told me in work wether it's true or not I don't know she reckons the younger patient are favoured more and get the better treatment, me been 51 I wouldn't say I'm old, don't know how true this is .

Been awake half the night with my hands been so stiff and numb it's waking me up, I cannnot wait for my clinic next Tuesday they need a different treatment all together, benepali should work I've been on it 12 weeks , that's the time frame it should work in well it's not for me, how draining is it all finding the right treatment. Anyway heels have a good day.

younger patients favoured - hope not. sorry 4 yourpain , hope u get sorted soon. excuse typing left arm not working n am l-handed. temp though. nurses n receptionists - be wary. b4 i saw gp 4 results in 2015 i asked over the phone 4 results n she said 'shdn't say but it's early onset rheumatoid.' I WAS 72 THEN LOL. so ignore idiots well meaning or not, n hang in there. sending virtual hugs xx

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