New to Rheumatoid arthritis : Hi, feeling slightly... - NRAS

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New to Rheumatoid arthritis

HappyD34
HappyD34
23 Replies

Hi, feeling slightly dazed as I was told by my GP today that my blood tests carried out by the hospital showed 264 for CCP with a RF of 24 and have also received an appointment now for more tests at the hospital. His view was that this was good news in that my CCP score is strongly positive and therefore likely I have RA and treatment good. The borderline figure for CCP is 30, so he tells me so my figure of 264 has heightened my fear of just how bad things may be but the truth is I have no idea what this figure actually means. Any help or tips to keep calm and stay positive with a brief understanding of what that CCP figure means will be very grateful.

I’m 53 and had immense stress over past 2 years and admittedly am prone to think the worst but also need the truth

Thanks for any help , feel bit daft , never done any posts before.

23 Replies
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Tinkerbell5

Hi I had a very high reading to tell u the truth I don’t have a clue but with all the medication available it makes it a little easier all the best 🍀

1 like
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Nessa28

Please try not to worry . This forum is fantastic . Everyone has their own journey , but regardless they support , laugh and cry with each other . You'll find out so much information that will help you , by others that have been in your shoes . Ask questions , rest and take onboard the changes you can make. Don't google it's never accurate and Worry and stress are not your friends . Start to keep a pains diary so you can also your doctor questions prior to seeing the rheumatologist . Most important be kind to yourself . 🤗💐

6 likes
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HappyD34
HappyD34
in reply to Nessa28

Thanks Nessa28, really good advice and very helpful,

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Cornwa11

Hi, welcome. I’m new here too as was diagnosed a month ago. I’ve seen my rheumatologist and had all the tests so a little ahead of you. Like others have said be prepared with questions and if you can take someone with you as everything will be daunting and you will forget everything by time you get home. You will have better days, don’t push yourself, you will suffer . Listen to your body,I’m just starting to realise this, learnt the hard way. As for the readings, mine were high too but have no idea what they all mean. Anything you need to know there is always someone on here to help you. All the best

2 likes
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AngelMar

Hi, and welcome, I’ve posted a link on your CCP blood reading hope it explains things better rheumatoidarthritis.org/ra/...

Try not to worry as stress is a HUGE factor for inflammation I’ve had a year of stress and to be honest my inflammation is just settling down now after 8 months. Be kind to yourself. 🤗X

1 like
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HappyD34
HappyD34
in reply to AngelMar

Sorry to hear that you’ve had stress too, I think some people think it’s an excuse so really good for me to know and share . Hope that your stresses fade and then go xx

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AgedCrone

Hi Happy....Like you my ccp Score was very high.....luckily it was very early on in my RA diagnosis...so I got treatment on Dmards quickly & 20 + years later I am doing well. In fact I'm living proof that a mega CCP score does not mean the end of the world ....for me it meant fast effective treatment.

So don't stress too much.....we'd all prefer not to have a rheumatic disease, but the best treatment is available here in UK ( I am presuming you are in the UK?) & it sounds as if your rheumatologist has ordered all the necessary tests & will organise a treatment plan when he has all the results, then you will be prescribed what he thinks appropriate.

One important thing to remember is that we are all different...so don't think "X is doing well on a certain drug so I want it."

A lot of the drugs people on here are doing really well on......did not help me at all. So be patient if the first drug you are prescribed isn't 100% effective, but do tell your Rheumy team...it's a two way street..if you don't tell them you don't think it's working they can't help you.

Good luck, I hope you are settled on effective treatment soon.

4 likes
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Sjhoney

Hi, it’s a bit of a shock getting your diagnosis, I’m still coming to terms with it 2yrs later.

What I found interesting in your letter was the fact that you din’t know what all these numbers mean. It makes me wonder why they give us this information without an explanation? My daughter is a gp so she was able to translate all the various acronyms and scores etc, but why give folk a number and not explain what it means? It renders the information useless! And then they wonder why we go to google 🙄

Good luck with your journey 😊

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helixhelix

Hello and welcome.

All it means is that your body has produced a specific antibody which is commonly seen in people with RA. So having it means you are more likely to have the disease, especially if you have the other symptoms of swollen joints etc etc. You'll be classed as being sero-positive.

If you can't resist googling (best not to really) you'll find lots of stuff that says people with a high reading like yours tend to have the most aggressive disease. However that's not always true - certainly wasn't for me and many others on here - so don't focus on that.

Instead I'm actually pleased I had a high reading as it means there was no doubt about my diagnosis and I was treated immediately and effectively. You'll read dreadful stories of sero-negative people waiting in pain for years for a diagnosis.

I was diagnosed at same sort of age as you, and had a dreadful time to start with as the disease went nuts. However the drugs worked and I got back to 95% normal, which is where I've been for most of last 8+ years. You wouldn't know I had a chronic disease at all. For most of us this really is a manageable disease and it's a small minority now who have big problems. If this has been caught early and you are treated positively chances are it will be fine for you too.

6 likes
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HappyD34
HappyD34
in reply to helixhelix

Hi, thanks so much , really good advice and has settled my mind 👍🤗

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stbernhard

Hello Happy, welcome to the forum. Another very good source of information is NRAS UK. You will find answers to most of your questions there. They also have a good help desk and one to one peer support. We will all try to help you as well. Having RA is not the end. I live a good active life with it and so do many others. All the best.

1 like
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HappyD34
HappyD34
in reply to stbernhard

Thanks, it’s fantastic to know there is a great network of support, be ideal if GPs directed us to it. 👍

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HappyD34

Thanks to everyone who has replied, what a great start to my day 👍. Funny really I don’t do any Facebook, Instagram or any social media until this and it’s made me really appreciate everyone’s help and good advice, 🤗. Some doctors do I guess get sucked in and forget that we don’t have the knowledge they do so it’s up to me/us to ask those questions. One quick question, can we drink on meds? I am partial to red wine , I’ve already changed my diet so if needs be I’ll have to change that too ☹️. Have a wonderful day everyone and good luck to Cornwa11 too.

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stbernhard
stbernhard
in reply to HappyD34

After the first year of agressive treatment I never let RD get in the way of a pint or a glass of red occasionally. It depends on how your liver copes. We throw a lot at it with our medication, so moderation is probably not a bad thing. Cheers.

1 like
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HappyD34
HappyD34
in reply to stbernhard

Thanks👍 Good to hear not all doom and gloom. Have a good day

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Ruth12345

Hi. If we have to have RD then this is the place to be. Im like you, dont do any social media but this site is essential for support, info and a bit of light relief. Some say no drinking but most people, I read on here, say the odd glass is fine. Im sure others who know more about this will reply. I have a wine on and off and so far so good, no problems. I also drink a lot of water. This is an uncertain time for you so just realise we will all do our best to help you through it. I say we, but there are some excellent regulars on here who are a fountain of knowledge and have lots ofexperience, so it is them really. I wish you all the very best.

5 likes
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HappyD34
HappyD34
in reply to Ruth12345

Thanks Ruth12345. Oh dear it hurts that’s I may not be able to have a bottle to myself on a Friday and Saturday night as hubby and I enjoy this but I’m starting to realise that to live life I have to be as healthy as I can be and if doctors say cut it right back then that’s just what I will have to do. It’s a huge relief to feel that you aren’t on your own so thank you so much for advice and all the best

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Ruth12345

I know how you feel. I now have a bottle to myself but I buy the little bottles and make it last 2 to 3 glasses as i add slimline tonic. Not the same but a good comparmise I find.

2 likes
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HappyD34
HappyD34
in reply to Ruth12345

You are my saviour, that’s cheered me up even more 🍷👍

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Mall

Hi There, welcome to the forum. In response to your question about drinking on meds well that depends on the med and how much you drink. I too am partial to a glass or two of red wine. Methotrexate can be hard on the liver but it is a very good treatment for active RA, it turned my life around and enabled me to continue working, scuba diving, and lead a fairly normal active life for some 15 to 20 years. I have since retired and need to take life much easier. Unfortunately this drug and alcohol are not good bed fellows. However if prescribed any drug that can have an impact on your liver, your liver is monitored by regular blood tests. In the early days of methotrexate use in the uk alcohol was a complete no no. Now drinking within uk guidelines is common place, I have a small glass of red wine with my evening meal most nights.

You will be give information leaflets at your RA clinic about drugs like methotrexate if they are prescribed. Also the NRAS website have good information about drug treatments.

improving our lifestyle all round by eating healthily, not smoking, drinking sensibly, reducing stress and taking appropriate excercise, alongside drug therapy, all help to get on top of this disease.

3 likes
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HappyD34
HappyD34
in reply to Mall

Hey thanks Mal, it’s hopefully not all doom and gloom. I’ve had a real couple of stressful years, lost my dad just over a year ago and had a horrific year in work, it never ceases to amaze me how nasty some people can be but also how nice people can be too so stress has and still is huge for me. I’m at a stage where I need to find “my worth” outside of work. I’ve a passion for birds of prey and am a volunteer at a centre and that is an ideal destresser. Sorry you had to give up your scuba diving now but it must have been fantastic for you to have been able to do something out of the ordinary, you must have many happy memories . Have a good day and thanks for your reply

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rab1874

Don’t worry your in the right place with the rest off the crazy gang and we all bounce off each other come rain shine or snow xx

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HappyD34
HappyD34
in reply to rab1874

👍😜😀

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