Hi Paul,

Welcome to the forum but sorry you have RA.
You can ask as many questions as you like on here and there is usually someone with an answer!
Your CRP is high, which shows there is inflammation in your joints, but I'm afraid I don't know about the anti-CCP.
It's understandable that you are looking for all the information you can find, It's very confusing when first diagnosed.
Keep posting on here and you will not be alone with RA. , we all know what you are going through.
Looking forward to getting to know you.

Love, Doreen xx

Hello Jackie and Doreen

I am stunned by the quick replies! Thank you so much for the advice and encouragement, both of which are very much needed. I wonder why there is a shortage of men on here?

Have a great day

Paul.

Hi Paul.

I remember the floundering sensation! Ask for some of the leaflets that NRAS have printed - they are a great place to start. One of the things that I found so frustrating at the beginning, is how long some of the drugs have to be trialed before I could know if they were working at all. I was started on Sulphalazine, then they added MTX, and now a third - calling it triple therapy. Every one and every department has different approaches, but I was re-assured to be told that 'I' know how I feel.

Keep asking, and let us know what they decided to start you on.

Hello Paul,

Welcome to the NRAS forum. Sorry you have RA but you will find comfort from all on here.

I am Rose from Somerset and was diagnosed with RA nearly 2 years ago. MTX, Leflun, and
Sulph failed so waiting now to see what Spec is going to do.

Good advise above and I don't think I can add anymore. Good luck and keep posting

Rose

Hi Paul

Good to hear from you, and welcome to the forum.

I am still quite a novice to RA having been diagnosed towards the end of last year so not able to give you too much advice, but you will have a great deal of help and support with us on here. I was diagnosed after an Anti CCP test which read at 97, I too even now do not know the significance of the reading to be honest but I did read a post on here the other week about it and I think it is quite high but I haven t concerned myself too much with it.

Hope all goes well with meds you will start taking shortly.

Keep posting, you might encourage more men to keep in touch with us

Julia

Hi Paul, I think your result for anti-CCP is kind of medium-high. This test is at least 96% accurate in identifying RA across a range of studies. The RF is also very indicative of it of course. I had somewhat similar results to yours 2.5 years ago, and am now in clinical remission thanks to combination of Humira and MTX. It was long and sticky getting here though, a great psychological challenge and more to come I'm sure.

I wish you well with your particular battle and wanted to link you to this paper about testing for when you feel you can absorb someof it. The discussion and conclusion are in English ;)

Here's some more interesting background for you at some stage, a lovely clear epidemiological study of RA. Despite what it says about conflicting studies about onset in opst-partum women, I'm another, like rheumatoidmummy, who onset directly after giving birth. My clinicians have called it an 'immune storm' whereby the reactivation of my immune system after its partial supression for pregnancy has seen it come back wildly not right. I also had one after my first child was born, losing my thyroid function and gut immunity at that time. I found it an important step to understanding what I was facing to hear this and read this kind of thing, as otherwise I cou;dnt' accept the situation and evolve ways to deal with it.

Best wishes to you, franky

Hello again everyone

Just a quick note to say a big thank you to all of you who have taken the time and trouble to reply to my posting; it feels like I've joined a great big family!

I certainly get encouragement from the fact that I am far from being alone at this early stage, and also my test results seem quite mild in comparison with others. Maybe there is hope yet!

A slight complication occured today. For reasons best known to themselves, I was sent for a chest x-ray after my last consultation. I had a call from the hospital this afternoon to say that the radiographer had not cleared me, and that as it was a 'soft' x-ray (whatever that might be) I needed to have something more definitive. They will discuss this with me when I go next week.

Whether this means a hold up in my treatment they were not prepared to discuss over the phone. So the saga continues, but at least I have somewhere to discuss things.

Many thanks again to all of you.

Paul.

Hello Paul, and a big welcome to the forum, though of course I`m sorry you have been diagnosed with RA.

I had to have a chest X-ray before starting MTX - I think that`s fairly standard - but I`m sorry, I don`t know what a "soft" X-ray is. They may give you Lung Function Tests too, before you actually start taking your MTX.

Keep posting,

Kathleen x

Hi there and sorry to hear you've had the diagnosis.

I'm fairly new to it myself although I think now this disease has been nibbling away at my joints for the last 10 years before coming out in full force last year when I got my own diagnosis. I have sero-negative RA which is more difficult to treat and more unpredictable apparently so I'm still in the testing stage for medications.

My advice to you is to clue yourself up on the condition as much as possible. The more you know about it the better prepared you are when you go to see consultants, nurses, GPs etc. Read everything there is to read about the condition and become familiar with it. Note any unusual symptoms, pains, swellings, illnesses - anything - that you didn't have before. Nothing is too trivial and some of the 'silly' things I dismissed were actually significant.

Take control of the disease as early as you can. Plan for change and prepare for a rollercoaster of emotions from shock to denial to grief. It's normal to grieve over your diagnosis once you realise things probably will change but rather than see that as a negative thing see it as a positive. I fought for months to live as normal but now I'm beginning to realise that actually it's quite nice to be able to say No, to relax, to sleep when I need it, to ask for help and to be a bit selfish now and then. I'm a control freak, the one who sorts everything out and dives in at the first sign of trouble. Now I can't and you know, it's not sucha bad thing

Don't hide the condition from your friends and colleagues. They won't understand, think you just have a bit of stiffness. I tell people now I have an autoimmune disease which is attacking my joints and organs and find people get a grip with teh seriousness of the condition and adjust accordingly.

Be positive and be like Mulder - question everything. Go to your appointments armed with questions. The more proactive you are in your disease management the better results you'll get and the more your GP/consultant are likely to open up and discuss/be honest with you about your options rather than just chuck pills at you.

You've come across a wonderful source of advice and peer support. The peopel here will tell you more than any medical expert will. Some have lived with this disease all their lives, many have gone through what you're now going through. All understand your fear, your frustration, your anger, your confusion, your questions. I would have been lost without them. When you're down they'll lift you up, when you question they'll give you answers, when you want to scream and yell they'll cup their ears and offer a shoulder. Don't be afraid to ask, ask, ask because information and knowledge is your greatest weapon against this disease.

xxxx