More questions!

keith1971

Hi all,

I got a copy of my latest blood results through the post today & it's left me even more confused than before!

I've been diagnosed as having PA -- rheumatoid factor is negative but anti-CCP antibodies were weakly positive at 21 -- doesn't this mean I have RA or will develop RA?

My other levels were :

ESR - 13mm/hour
CRP - 6.6mg/L

And my Xrays showed 'mild degenerative change' to my big toe.

x

dreamdaisy

The good news is that your inflammatory markers are pretty low - I wonder if that is the sulph already doing something - what were they before? PA does not show a positive rheumatoid factor and as for the anti CCP bit, well, I have no idea. Sorry. DD

keith1971

Hi Daisy,

Hope the knee's better?

The blood tests were taken before I started the sulfa - next test is 15th April

Apparently the anti-CCP test is more predictive of RA than the rheumatoid factor & that positive tests in the early days indicate a more erosive course for the arthritis......so yes, good news that the inflammation is pretty low at the moment but bad news that the general prognosis may be bad.

:sad:

dreamdaisy

I reckon the prognosis for anyone recently told they have arthritis seems bad initially, but, as you no doubt realise by now from reading various posts we are all different in how things progress and at what rate. I still think it's a positive thing that you know what is happening and have now accepted that meds have to play a part. You are still in the early stages of it all, your doctors are aware (or are at least considering) what it is or might be and steps are being taken. It took years for me to be told what was at fault and by then the damage was done.

As for me, well all three 'treated' joints are still raw and sore, the steroids have, as usual, failed to make any great difference and I am well and truly hacked off with it all. Never mind, eh? It will pass, all things do. DD

frogmorton

Hi Keith

Just wanted to offer my support and hope that all will be well over time. Glad you are on the sulfa and it's going ok for you at least that should go some good way to preventing any more damage.

Love

toni xx

keith1971

Hi Lynn,

Thanks for the positive words -- the mental aspect of all of this is the hardest thing to cope with in my case at the moment.

Google is a terrible thing.....and on the other hand, a great thing. Without it I wouldn't have fully understood what 'Anti-CCP' even meant but now knowing it's just added a whole new set of worries to my already overflowing bag!

I'm trying to live in the now & not get caught up in what the future holds but I'm finding it increasingly difficult to be honest.

Guess I should stop Googling everything, take my meds & just get on with living eh?



xx

dreamdaisy

collywobble is right, the way these things are dealt with now is very different. I did not have any blood tests until I went in for surgery - then they found my markers were 90 plus. I didn't know what that meant, and actually didn't care, I just wanted the huge left knee sorted out. I remember starting the sulph and thinking 'Well, that's OK, I am on meds now and it will all be sorted.' Stupid girl. I don't bother thinking that any more.

This must be a huge struggle for you because up until now you have been healthy, yes? Luckily I have never known that, this is just the next step on life's crappy path as far as I am concerned. I wasn't expecting it, I was waiting (and still am) for diabetes as I was told that was a given after so many years on inhaled steroids so to find out (eventually) that I had some form of arthritis was left-field, to say the least (especially as so many people told me this fat left knee would go away, sort itself out). The nett result for me is far too little medication given far too late: you stand a much better chance of getting on top of this (despite losing ten months) as they have diagnosed you far earlier and, currently, you are not too badly affected. Yes, a few of your joints are sore, uncomfortable but I think I am right in saying that you are coping without pain dullers and you can walk unaided so let's hope the sulph does do something, so that the other, stronger weapons in the arsenal can be left on the shelf for a while yet.

Googling stuff isn't such a good idea, simply because we are not doctors, we don't understand the implications of what we read and we don't know what it all means. My mum knows I am on an anti TNF treatment but, quite sensibly in my opinion, I haven't told her what TNF means. Google it, you'll see why! That word has other medical meanings, not just the one that 'commoners' (ie not doctors) associate with it. Worry about the stuff you do understand, if you have to do research then use trusted sites, ask your rhuematologist questions, but don't wiki things, I don't think it wise.

I saw you posted on helplines: they are closed for the last Friday of every month for training - you could talk to them though about the impact of this on you: that is something they could help with. Have you thought about ringing them? Right, work beckons. I wish you well. DD

keith1971

Hey DD,

As always you're right about most things.

Yes, I've been in pretty good health all my life - only real major concern was a couple of incidences of atrial fibrillation but my heart was tested & came back completely normal (last time was 2009). They believe this was alcohol related as I once had a rather large liking for the top shelf of the bar! I haven't touched a drop since late 2009 though.

Yup, coping without the pain killers so far - this isn't because I'm not in pain, more that I want to become used to the pain as it is now so that when it gets worse I'll have better tolerance. And yes, I can walk unaided, though with discomfort. Right knee has sharp sharp pain when I sit down or get up or climb stairs.

I think I've Googled far too much already & filled my head full of worst case scenarios but it's helped me understand better what's actually going on so there is a plus side I guess.

When I see the rheumatologist next month I'm going to discuss the possibility of more aggressive treatment (methotrexate in addition to sulfa?). My wife & I have decided that my long term health is more important than having another baby. We count ourselves lucky to already have a beautiful boy.

Thanks for the info regarding the Helpline also -- I know they're not doctors & probably won't offer any advice that I want to hear but typing it out made me feel better at the time. I'm sure you can tell by now that I'm a bit of a control freak & this disease is something that I have to learn I can't actually control.



Thanks again for the sage words - hope you have a nice sunny weekend.

K.
x x