RE: anyone have this done

[Guest guest]

Cooky yes, the Anti CCP is the one that they do now concurrently with the RF, if

both are positive, as mine was...then you have RA...Dr. Whitman had me do that

about 3 yrs ago...Sometimes just the RF does not predict RA..but the Anti CCP

along with the RF...means you have it...so do I....

Debbie

rheumatic anyone have this done

Hi everyone,

I just got back from that awful new rheumy. This was a followup and not much

better than the first visit. She actually touched me this time!!

She did some blood tests and one of them I never heard of before It is a

Anti CCP my result was >250 which according to the lab note >60 is a strong

positive for rheumatoid arthritis. I was dxed in 1997 so that did not

surprise me. I was surprised how high it was. Anyone know about this test?

Anyone have this done? What were your results?

Thanx

cooky

[Guest guest]

Hi, Cooky. Sorry to hear about the new rheumy. Is she the only one close by?

To answer your question re: CCP stands for Cyclic Citrullinated Peptide. It is

supposed to be a better test for the RA factor and which shows up sooner than

the ANA test. See link below.

I was diagnosed in 2007 sero negative RA - a factor of 48, then a few months

later 53. My CCP (only done once)was 15.6, which you know, less than 20.0 is a

negative factor. So even though this test is more accurate, sooner, it still

lags behind the disease.

I'd ask again to verify yours is really that high. Then again my sed rate was

always very high, 3x the very strong upper limit range and not a rheumatoid

factor...just an inflammation factor.

http://www.fbr.org/publications/factsheets/fs-ccp.html

Best,

o

>

> Hi everyone,

>

>

>

> I just got back from that awful new rheumy. This was a followup and not much

> better than the first visit. She actually touched me this time!!

>

>

>

> She did some blood tests and one of them I never heard of before It is a

> Anti CCP my result was >250 which according to the lab note >60 is a strong

> positive for rheumatoid arthritis. I was dxed in 1997 so that did not

> surprise me. I was surprised how high it was. Anyone know about this test?

> Anyone have this done? What were your results?

>

>

>

> Thanx

>

>

>

> cooky

>

>

>

>

[Guest guest]

Thanks Deb,

I was really shocked to see min so high especially when I had been on

antibiotics for so many years. I do have to say I also had x rays done of my

hands and feet and there were no signs of destruction due to rheumatoid. I

do have osteo tho.

Hugs

cooky

Cooky yes, the Anti CCP is the one that they do now concurrently with the

RF, if both are positive, as mine was...then you have RA...Dr. Whitman had

me do that about 3 yrs ago...Sometimes just the RF does not predict RA..but

the Anti CCP along with the RF...means you have it...so do I....

Debbie

Hi everyone,

I just got back from that awful new rheumy. This was a followup and not much

better than the first visit. She actually touched me this time!!

She did some blood tests and one of them I never heard of before It is a

Anti CCP my result was >250 which according to the lab note >60 is a strong

positive for rheumatoid arthritis. I was dxed in 1997 so that did not

surprise me. I was surprised how high it was. Anyone know about this test?

Anyone have this done? What were your results?

[Guest guest]

Hi o,

My sed rate was 20 which I had done a month before and it was 8.

To understand.. you need to know I have been on minocin since 1997 with

Clindy IV's also (a lot of them)..I have had negative RF and sed rate for

YEARS. I stopped taking mino last summer and by winter I started having

swelling and pain. I had my doc do a RF (did not know about CCP)and it was

74 and sed rate was 8. I have not seen a rheumy for 8 years. PCP recommended

this one who I will not go back to. I just started back on minocin when

this test was done. I was shocked to see the rate so high.

I will have the test done again now that I have been on minocin and had 3

clindy IV's.

Thanks for the info.

cooky

Hi, Cooky. Sorry to hear about the new rheumy. Is she the only one close by?

To answer your question re: CCP stands for Cyclic Citrullinated Peptide. It

is supposed to be a better test for the RA factor and which shows up sooner

than the ANA test. See link below.

I was diagnosed in 2007 sero negative RA - a factor of 48, then a few months

later 53. My CCP (only done once)was 15.6, which you know, less than 20.0 is

a negative factor. So even though this test is more accurate, sooner, it

still lags behind the disease.

I'd ask again to verify yours is really that high. Then again my sed rate

was always very high, 3x the very strong upper limit range and not a

rheumatoid factor...just an inflammation factor.

http://www.fbr.org/publications/factsheets/fs-ccp.html

Best,

o

[Guest guest]

Trying to understand this better. I have seronegative RA and to my

knowledge I have not had the CCP test. If it comes back positive in

my case, what does that tell me?

[Guest guest]

Hi Cookie,

being on AP for many years....how do you feel? Do you have a life? Sally

RE: rheumatic anyone have this done

Thanks Deb,

I was really shocked to see min so high especially when I had been on

antibiotics for so many years. I do have to say I also had x rays done of my

hands and feet and there were no signs of destruction due to rheumatoid. I

do have osteo tho.

Hugs

cooky

Cooky yes, the Anti CCP is the one that they do now concurrently with the

RF, if both are positive, as mine was...then you have RA...Dr. Whitman had

me do that about 3 yrs ago...Sometimes just the RF does not predict RA..but

the Anti CCP along with the RF...means you have it...so do I....

Debbie

Hi everyone,

I just got back from that awful new rheumy. This was a followup and not much

better than the first visit. She actually touched me this time!!

She did some blood tests and one of them I never heard of before It is a

Anti CCP my result was >250 which according to the lab note >60 is a strong

positive for rheumatoid arthritis. I was dxed in 1997 so that did not

surprise me. I was surprised how high it was. Anyone know about this test?

Anyone have this done? What were your results?

[Guest guest]

It tells you that you have rheumatoid. BUT the result has to be over or >60.

It is new and more defining than a RF.

From: rheumatic [mailto:rheumatic ] On Behalf

Of carey largent

Sent: Tuesday, September 14, 2010 12:05 PM

rheumatic

Subject: RE: rheumatic anyone have this done

Trying to understand this better. I have seronegative RA and to my

knowledge I have not had the CCP test. If it comes back positive in

my case, what does that tell me?

[Guest guest]

Yes I do have a life. I didn’t for a lot of years at first. Right now I could

not go back to nursing because I don’t have strength in my hands. I can do

almost everything in moderation. I am 63 years old now so my body is not like it

was in 97 when this first developed but I am OK with it.

My story is on http://www.rheumatic.org/medhist.htm along with many others.

I am on disability tho. I have a problem with my fibro also. I had bad

depression because I could not work like I used to and would get flack for it. I

also had a lot of things happen at work that severely depressed me for the last

7 to 8 years. I slept constantly and changed meds a lot. At that time my fibro

was bad and walking was a real chore.

Right now I worry a lot (smile) because I started getting joint problems this

past winter. That is why I had the blood work done.

Hugs

cooky

From: rheumatic [mailto:rheumatic ] On Behalf Of

mannasal@...

Sent: Tuesday, September 14, 2010 2:05 PM

rheumatic

Subject: Re: rheumatic anyone have this done

Hi Cookie,

being on AP for many years....how do you feel? Do you have a life? Sally

[Guest guest]

Thanks for responding. I called my rheumy and asked if I had that

test done. Yes and my ccp was 17 and my RF negative (she didn't give

me a number when I asked, just said again that it was negative). Sooo,

do I not have RA?

My CRP was 1.8 (normal is 0-0.9)

Sed rate - 37

That was in June of 09 but from there I got worse, so not sure what my

numbers where last fall/winter. Currently I am enjoying remission

during my pregnancy (30 weeks along) and it's fabulous.

I am just trying to get all my ducks in a row for after baby arrives.

I would like to start AP. Will probably start with a call to Dr.

Sinnott. During my worst flare, my affected joints were: neck, right

elbow, both knees and both ankles and on and off pain in right wrist

and hand.

Side note:

I have been tested for gluten intolerance and was told although I do

not have Celiac, I do have a severe intolerance of gluten.

I just don't feel as though my Rheumy does the kind of " digging " into

my symptoms as I would like her to. She is satisfied to just tell me

I have seronegative RA and give me drugs which I have NOT gone on yet.

Only was on low dose prednisone and plaqunil due to trying to

conceive 2nd child. My first flare was 6 mos post delivery of 1st

child.

Anyway, thanks for listening. This group has been a wealth of

knowledge and excellent resource and support as I navigate these

waters.

[Guest guest]

From: rheumatic [mailto:rheumatic ] On Behalf

Of carey largent

Sent: Tuesday, September 14, 2010 3:07 PM

rheumatic

Subject: RE: rheumatic anyone have this done

Thanks for responding. I called my rheumy and asked if I had that

test done. Yes and my ccp was 17 and my RF negative (she didn't give

me a number when I asked, just said again that it was negative). Sooo,

do I not have RA? I WOULD SAY NO

My CRP was 1.8 (normal is 0-0.9)

Sed rate - 37 THIS PROVES YOU HAVE INFLAMATION GOING ON IN YOUR BODY. THERE

ARE OTHER THINGS YOU COULD HAVE. LUPUS, IS ONE OF THEM. How about testing

for Lymes? MAYBE SOME OF THE OTHERS MAY WANT TO JUMP IN HERE WITH IDEAS???

That was in June of 09 but from there I got worse, so not sure what my

numbers where last fall/winter. Currently I am enjoying remission

during my pregnancy (30 weeks along) and it's fabulous.YES I AM SURE YOU ARE

FEELING GREAT.

I am just trying to get all my ducks in a row for after baby arrives.

I would like to start AP. Will probably start with a call to Dr.

Sinnott. During my worst flare, my affected joints were: neck, right

elbow, both knees and both ankles and on and off pain in right wrist

and hand.I WOULD CALL BEFORE DELIVERY AND SEE IF HE WON'T ORDER SOMETHNG FOR

THEN. YOU KNOW FROM PAST PREG HOW SOOM THE SYMPTOMS RETURN..ALSO HE MAY PUT

YOU ON ERYTHROMYCIN WHICH WILL NOT HARM THE BABY.

Side note:

I have been tested for gluten intolerance and was told although I do

not have Celiac, I do have a severe intolerance of gluten.

I just don't feel as though my Rheumy does the kind of " digging " into

my symptoms as I would like her to. She is satisfied to just tell me YOU

NEED TO SEE ANOTHER RHEUMY OR SENNOT AND GET THOSE TESTS REPEATED.

I have seronegative RA and give me drugs which I have NOT gone on yet.

Only was on low dose prednisone and plaqunil due to trying to

conceive 2nd child. My first flare was 6 mos post delivery of 1st

child.

Anyway, thanks for listening. This group has been a wealth of

knowledge and excellent resource and support as I navigate these

waters.BEST OF LUCK TO YOU AND FAMILY.

HUGS

COOKY