anti ccp

wrenis

Hello everyone,
Hope today is a good day for you all.
I posted a few days ago and had some feedback regarding a new test for RA, i think it was called anti ccp. i asked my gp about it and she didnt know anything. is there another name for this test? does anyone know much about it?
any feedback is always appreciated. thanks again everyone.
love wren

magenta

Hello Wren,
I got this test done a few months back and it was just called 'The AntiCCP test'. It's quite new and takes about 8wks for results to come back. I was tested because I'm sero-negative and it can be helpful in diagnosing RA as it's more accurate. I was negative so the rhuemy has said I don't have RA. Hope this helps?
Magenta

wrenis

thanks magenta.
I live in Canada so perhaps the test isn't available here yet.
I will have to look into it further.

mind if i ask what your symptoms are/were? and if you dont have RA what did the doc say you have or what would be causing symptoms that would lead you to think you have RA???

shonaarnold

Hi

It's called an anti-ccp antibody test, it is relatively new and is more accurate at diagnosing RA. My GP had never heard of it but when I went to hospital they tested me for it and of course it was positive It can also predict how severe your RA is likely to be. It will pick up RA much earlier than the other test which is really important as there is only a short space of time to start treatment before permanent damage is done.

Shona

joyous

hi all i had a test done a while ago was just sorting som paprs out and found it i had rhe usual one esr that came back at 13 mm the best its ever been , and this other one its called c- reactive protein mine was 3.3 said below 10 is ok and haemoglobin was 11.9 . what is this c thing has anyone else had it before im sure i haven joy

jackie1955

Hi, For excellent information on the Anti CCP Test try this:-

On main page of this forum, click on the small 'SEARCH'

Type exactly 'Anti CCP Test' and tick 'all words'

Selection of postings will appear, scroll down to the one near the bottom titled 'Anti CCP' dated 29th July 2008, click on that.

Then scroll down to a posting from hobnobob who has included a very informative link. Click on the link, and when this opens go to A-Z of Tests. You can then click A, scroll down and you'll find the Anti CCP Test.

It is very informative and explains the test excellently.

Hope this helps! Jackie x

magenta

Hi Wren,
Hope you are well? What time are you at? My hubby has relatives in Canada, near Toronto. They used to stay in a place with a name I can't spell!
My symptoms: 20yrs of pain and inflammation. No RF in blood hence the sero-neg arthritis. I have symmetrical pain/inflammation and things have got worse over the last few years. They now think I've got fibromyalgia (don't know if it's as well as the arthritis or instead of). They also mentioned inflammatory arthritis but then dismissed this. Also thought I had PA but again I don't 'fit' into this. I'm quite odd but I do have OA in jaw-at least I know I've definitely got that! Everything else that's been diagnosed seems to have been a guess Hope you get the test!
Magenta x

wrenis

Hi Magenta,
i live in British Columbia, which is pacific time.
I dont understand much about seronegative arthritis.. what does that mean>you have arthritis, but nothing diagnosable?
sorry to hear you've been going through this for many years. My symptoms are only recent, so i cannot fathom dealing with the pain and frustration for that long.
I recently went to a naturopath and she's giving me some remedies to try... i have to pick them up today, so will let you know what they are and keep you posted on the results. she also tried Auricular Therapy, which was kinda strange and interesting. She would like me to stay away from nightshade veggies(which includes peppers, tomatos, potatos and eggplant), no coffee and increase cold water fish intake.
Have you tried any natural remedies??
wren
ps still waiting to hear back from my doc regarding the test

magenta

Hi Wren,
British Columbia? Sounds nice-weather good?
Anyway, sero-neg arthritis just means that you don't have any Rhuematoid Factor in your blood but present with the same symptoms as RA. I'm used to not really knowing what's wrong with me-my hubby say's I'm a mystery
I have tried homeopathic remedies years ago when no-one else seemed to be able to help. The powders and tinctures they gave me didn't work for me-the only benefit I found was that the drs actually listen to you and try to understand and help. I don't feel I get this from the rhuemys, feel like I'm just another statistic!
Tried acupuncture which is good and enjoy wax treatments for my hands.
Forgot to say, with me, the rhuemys only give me anti-inflammatories to deal with things. They don't want me to try anything else like methotrexate or sulphasalazine. I'm going to look more into the fibromyalgia stuff, see if that helps.

Hope you have a good day,

Magenta x

wrenis

Hi Magenta,
BC is lovely, especially where I live, mountains and ocean. I live in the rock climbing hotspot. Too bad I can't climb this year.
RE sero negative .. do you have lots of joint damage? (sorry if this is too personal) ..but wondering what to expect. Re the meds, i thought my rheumy was too quick to give me a concoction of meds that all seem to have nasty side effects. so i stopped taking them. maybe you're better off not taking methotrexate?
I will keep you posted on how the tinctures go, and other stuff... just in case there is something new that may help you.
take care, and thanks for all your info.
xox wren

jackie1955

jackie1955 wrote:

Hi, For excellent information on the Anti CCP Test try this:-

On main page of this forum, click on the small 'SEARCH'

Type exactly 'Anti CCP Test' and tick 'all words'

Selection of postings will appear, scroll down to the one near the bottom titled 'Anti CCP' dated 29th July 2008, click on that.

Then scroll down to a posting from hobnobob who has included a very informative link. Click on the link, and when this opens go to A-Z of Tests. You can then click A, scroll down and you'll find the Anti CCP Test.

It is very informative and explains the test excellently.

Hope this helps! Jackie x

jackie1955

jackie1955 wrote:

jackie1955 wrote:

Hi, For excellent information on the Anti CCP Test try this:-

On main page of this forum, click on the small 'SEARCH'

Type exactly 'Anti CCP Test' and tick 'all words'

Selection of postings will appear, scroll down to the one near the bottom titled 'Anti CCP' dated 29th July 2008, click on that.

Then scroll down to a posting from hobnobob who has included a very informative link. Click on the link, and when this opens go to A-Z of Tests. You can then click A, scroll down and you'll find the Anti CCP Test.

It is very informative and explains the test excellently.

Hope this helps! Jackie x

Hi wrenis, Just wondering if you saw this posting and if it has answered your questions re the Anti CCP Test?

joyous

jackie1955 wrote:

jackie1955 wrote:

jackie1955 wrote:

Hi, For excellent information on the Anti CCP Test try this:-

On main page of this forum, click on the small 'SEARCH'

Type exactly 'Anti CCP Test' and tick 'all words'

Selection of postings will appear, scroll down to the one near the bottom titled 'Anti CCP' dated 29th July 2008, click on that.

Then scroll down to a posting from hobnobob who has included a very informative link. Click on the link, and when this opens go to A-Z of Tests. You can then click A, scroll down and you'll find the Anti CCP Test
It is very informative and explains the test excellently.

Hope this helps! Jackie x

Hi wrenis, Just wondering if you saw this posting and if it has answered your questions re the Anti CCP Test?

hi couldn find this site at all typed in santi ccp test said error all the time :?:

magenta

Hi Wren,
The only joint damage I have is due to the OA in jaw. All my xrays have came back 'normal' so far. I know that's good but doesn't explain the pain and inflammation. Hope you get things to work out for you,
Magenta x

wrenis

Jackie,
My apologies, I thought i had sent a thank you repy to yours?? strange.
Yes, i checked out the site and thanks, I did find the info helpful. I'm still waiting for answers from my doc tho. will keep you posted.
thanks again.
wren

Magenta,
thanks again for sharing your info with me. Hope you're feeling well today. I worked today with little pain, but am still feeling quite slow and weak. Hopefully I can get back into shape soon.
Doesn't it seem weird that you could have pain and inflammation for that many years but you're not diagnosed with anything.. i guess seronegative is a diagnosis?? seems like a non-diagnosis to me?? You'd think with all the technology out there someone would've figured arthritis out by now!!??!
I never knew it was so bad? More people should donate to research, so many people are affected!
there's my little rant for the day
thanks again for being there
wren

joyous,
cut and paste exactly what Jackie typed for the search. It will come up. I found it without trouble, but I copy and pasted, sometimes the search is case sensitive etc.
wren

wrenis

Just an update....
apparently i had the anti ccp test and the results were negative.
what now???
hope you are all having a good day.
wren

frogmorton

Oh Wrenis
I don't know what to say. It is so hard when youa re so poorly and can't get any answers
Have ou seen any kind od specialist - sorry I can't remember.
Maybe it's time they at least treated yu symptoms - the diagnisis may become clear in the future - some people take years and years to get a diagnosis
You look after yourself
Toni x

magenta

wrenis wrote:

Just an update....
apparently i had the anti ccp test and the results were negative.
what now???
hope you are all having a good day.
wren

Hi again,
I work with someone who is RF -ve and she was told even if anticcp is negative, you can still have arthritis (that's what's happened to her). She's on all sorts of stuff including Hydroxychloroquine. What about fibromyalgia-that's what drs think now for me. Hope you get answers soon
Magenta x

wrenis

thanks for the support Toni. prior to seeing the rheumatologist different docs prescribed first naproxen, then indomethacin, then increased dosage of indomethacin and T3's. none of that had any real effect.
So far I've had 2 appts with the rheumy. the first time he prescribed methotrexate, hydroxycholoroquine and prednisone. I didn't take those for more than a week, my symptoms disappeared after a few days and then about a month later, when I was due to see the rheumy again, the symptoms came back. I felt pretty foolish to tell him I stopped taking the meds, but I felt confident that it wasn't the meds that were making me better(from what everyone says it takes those meds a long time to kick in). He was pretty understanding and suggested I take increased dosage of prednisone when i have a flare up, graduating dosage down over 5 days after the flare up. To be honest the flare ups are less intense than at first, but day to day I can feel an underlying pain. In the evenings I can feel pain in different joints, lots of cracking and muscle pain. My dexterity isn't what it used to be, and i can only manage a 6 hour shift at wk. As mentioned, I feel better than before, but seem to be on a plateau for the past few months. It would be nice to get back doing the things I did before and get working full time again.
Magenta.. regarding fibromyalgia, that was something that people suggested I might have. People also said that docs use that as a blanket term when they dont know what is really wrong with you. not to be discouraging, but it does seem like fibromyalgia is the "new" thing these days, everyone and their aunt seems to be being diagnosed. Let's hope your doc knows his/her stuff.
A girl I wk with has it and she takes methotrexate weekly and robaxaset at night. She works shorter shifts but manages. I hope you will find out what is causing your pain soon.
OA in your jaw must be very painful. did you have TMJ problems before??
hope you're having a good day!
hope everyone is feeling well today.
thanks for all the support.
xo wren

magenta

Hi Wren,
Hope you are well?
I know what you mean about the fibro thing but I do seem to have all the symptoms. I'm seeing my dr next week to ask about being referred to a nuerologist. Apparently they can do tests to diagnose fibro like lumbar punctures and nerve tests. I'm at the stage where I will try anything to ease the pain. OA in jaw is very painful-too many symptoms to tell you-I'm finding it hard to deal with. It gets me down being in so much pain. I've always had TMJ probs but nobody ever wanted to do anything about it and I think that's why I've now got OA. Anyway, I'm looking forward to the weekend, I'm not working so can relax and have a long lie in the morning!
Magenta x

wrenis

Hi magenta,
hope you had a great weekend.
did i mention that my naturopath said to stay away from nightshade veggies and coffee? it's been a few weeks and so far no flareups, just the regular aches and pains... but no joint lockups or anything major. Hopefully wont have to stay off them for too long, but perhaps my body is getting some time to get stronger... i cheated yesterday and had a coffee.. and a few scoops of salsa. no problem. so... i guess the true test will be when my monthly cycle comes around, if i dont flare up then things are getting better??? fingers crossed.
hopefully you will get some answers from the neurologist, and hopefully there is some way to make you feel better. wouldnt it be nice if there was a pain switch?? let me know how things go, I've been wondering how you were and missed your last message somehow.
take care.
wren

magenta

Hi Wren,
I had a good weekend thanks-you?
I cleaned the house on Sunday-felt guilty cos hubby started so I had to help him! I was supposed to go to drs tonight about my nerve probs but I cancelled-couldn't be bothered, weather too nice!
I'm struggling on as usual
Hope you have a good week,
Magenta x