referred to rheumy, after positive anti-ccp test.

[QueenBee1989]

hello everyone,

I just wanted to reach out really and see if anyone else had been in a similar situation. I’ve had vitiligo, lichen sclerosis and morphea for the last 8 years or so, things got bad with my skin but have improved alot now and I’d say it’s gone into remission.

Anyway fast forward I am 6 month post partum and have some auto immune bloods done again as my dermotologist was discharging me with my skin been better. She only re did them because I said I’ve been having a really sore foot - it’s my left side and my little finger and side of my hand aches a lot.

When I was pregnant I had pleurisy and was unwell that’s all else I can think of as wel as having gestational diabetes.

But my Anti-ccp result is positive. It is 28.3 CU it says. I understand this isn’t overly raised but it is still raised enough to test positive.

I’ve been referred to rheumatology because the dr said this test is quite specific for rheumatoid arthritis. I’ve no idea what my RF is I don’t think they’ve tested me for that yet?

Does this test mean I may not even have it yet and that I am likely to get it in the future?

I’m feeling all kinds of worried because of the heart and lung problems and also that I’ve read a raised anti-ccp could even be something like lupus or even cancer or autoimmune hepatitis. I’ve also read that the anti-ccp type also could mean that it is more severe form of disease. I feel like I’m just going to worry until I see someone.

If I haven’t got any of these yet I kind of wish I didn’t know I had the anti body because every ache and pain I feel I will just worry.

I’ve got a beautiful baby girl and two gorgeous boys to look after and just looking at some advice on how to navigate through this period whilst I await bloods.

I’d love to hear positive stories on people managing these conditions well with good outcomes.

Thank you everyone for reading x

[sylvi]

Get the tests re-done before you start worrying about something that could or could not happen, I know it is easy for me to say, but the thing is worry when you have something to worry about as this just could be nothing darling. Sending hugs your way. xxxxx

[medway-lady]

We’re not medically qualified but I think being positive for RA is better as you’ll get medications and it’s going to be treated quicker. RA is not a death sentence it’s very treatable and hopefully your life will improve hugely. So don’t panic or read too much Dr Google as that’s always scary and hopefully in a few months you’ll be in a much better place. Yes it’s a lifelong condition and has no cure but remission is the aim and then it’s just take the meds and forget it. Stay positive and be patient you’ve clearly had a good few events recently but this is not the end of your normal life rather than than an improvement to a normal life. RA medications take time to work and unlike antibiotics there is no one size fits all but you can find out a lot more on the NRAS website. X

[Gottarelax]

I don't have your conditions but I was tested anti-ccp postive/RF negative. I'd developed a very fast onset RA and was quickly immobile. Having said that, my response to the standard RA drug, methotrexate has been good and I don't think I have anything more to worry about than anti-ccp negative patients.

[GinnyE]

You’ve got an active imagination, as have I, by the sound of it! I had that initial test with the GP because of symptoms , it was raised and I was referred to Rheumatologist. I opted not to research things before I saw them, as I know what I’m like. They’d already done the extra bloods when I got to Rheumatology and I was strongly positive RA. Take this medication (methotrexate) he said and I’m going to treat to a target of you having no pain or damage. Six years later, with tweaking the dosage, I’m in remission (that means no symptoms I think). I hope your appointment is very soon so you can crack on with treatment if necessary. And enjoy your lovely little ones.