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41 - 60 of 95 Comments Last updated Sunday Jul 13
Amy

Candler, NC

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#42
Oct 13, 2011
 
Hi Amy, Are you taking a minocycline? How often and how many mg?
Thank you.

Sorry for the delay. Yes, I am taking minocycline, 100mg a day on Monday, Wed. and Fridays. The theory is that the antibiotic weakens the mycoplasma (bacteria living inside blood cells) and then the immune system kills the weakened bacteria. The pulse method of taking antibiotics seems to support this method the best and is what is recommended in Henry Scammel's "The New Arthritis Breakthrough." Many of the questions below can be answered through the site www.rheumatic.org . check out the FAQ and also join the support group. I have found a wealth of information there. I continue to do well, just have to watch my gut health by taking eating yogurt daily and also taking prebiotics. I use Miracle Fiber, Vitamin Shoppe brand. Prebiotics help support healthy gut flora.
umairah

New Delhi, India

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#43
Oct 25, 2011
 
hi am 26 and i was experiencing pain and swelling in my wrists,right ankle and my left knee.. i approaches a rheumatoligist and he asked me to get rf and anti ccp antibodies done.. got my rf and anti ccp antibodies done..my rf came <6 but my anti ccp anti bodies show 300.. i have an appointment with him next week..but i want to know hat this means..
ereico

Swartz Creek, MI

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#44
Oct 31, 2011
 
I just got the results of the bloodwork I had for RA but I don't understand what they mean and all I was told my test was normal.For the past few years I have elbow, both knee, wrists, shoulder and mostly upper back pain but my test was normal. Can someone explain what are these numbers mean I really appreciate your time explaining it.
CCP AB IGG <16
Negative <20
Weak positive 20-39
Moderate positive 40-59
Strong positive >59
Thanks
sue

Huddersfield, UK

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#45
Nov 9, 2011
 
Hi Im new to this forum , so please bear with me !!. I have been suffering from sero neg rheumatoid arthritis for 7 years , I have been on all the usual dmards with now result , I have tried nearly all the biolgics that have been available to me ,most did nothing , or I had the most horrendous side effects and couldnt proceed. Im currently on one called tozillizumab , which isnt brilliant but it is giving some relief . I have regular steroid injections into my joints , sometimes every 2 weeks ,. Ive been on this new biologic for 8 months , and altho Im not completely flare free , I have gone 8 weeks without injections . Rheumatoid is a really terrible condition , but i think you have to stay positive and keep looking into other treatments , altho im really fortunate to have such an excellent team who care for me .I would love to hear from anyone else on this drug or anyone who simply would love to chat .
Linkacyn

Weston, MA

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#46
Nov 9, 2011
 
Hi Sue I have both OA ANd as of this May RA...I am on methrotexatite ( spelled incorrect) Chemo pills...I take 10 pills once a week.. I just got my blood work and my CRP is finally normal...I am pleased about that. I do not see the Doc until January. I did not allow him to add all the other jolly pills on as I do not like taking alot of pills. I already take one for the OA and pills for all other problems I have. I am trying to get myself back to health and off of meds. My e-mail is cba47@comcast.net if you want to write to me on that instead of on here...I am sorry you had bad side effects I haven't had any, just a tad when I first started. I am very large and I am sure my bulk is likely helping to ofset the meds. may anti-ccp was 831 or something like that and it should be minus 30 or something like that...I would love to know what it is now, but they do not re-test and I do not know why... Chat with you again
Cynthia
Lynn

Dekalb, IL

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#47
Jan 4, 2012
 
I have had knee, back, hand(finger) and foot pain for years and during a standard blood panel I received an ANA positive test and was referred to a Rheumatoid doctor. They have run 3 sets of blood work on me now. The first and second showed a mild elevation on the RF tests. In that time the pain in my knees, hands and feet have been getting worse. My hands hurt all of the time. And sometimes my toes feel as though there is a string around them cutting off circulation and they get tingly. I have also been diagnosed with Fibromyalgia from this same RA doctor. The latest blood test came back that my RF was normal but I have Mild positive Anti CCP test. The doc says I have early RA. My husband thinks I need a second opinion and I'm just scared and confused. I'm a 26 year old mother of Two and my life is falling to pieces around me. Does this match any others symptoms? Not sure were to go from here.
Sherry

Toronto, Canada

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#48
Jan 4, 2012
 
april wrote:
I am having horrible joint pain in my fingers and toes and randomly other joints as well. It started 4 months ago and is getting worse. All of my blood work comes back normal. One crazy rheumy said that I had spondylitis but the diagnosis doesn't fit... I am waiting (immpatiently) to get in to another rheumatologist. My RF was 6 and my anti ccp was 16. I just can't figure out if they are looking at the wrong thing with RA... I don't know what else it could be.
any advice?
Hi there, was wondering how you made out. I am in the same boat my ra is 9 and cpp 14?
Stacey

Liverpool, UK

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#49
Jan 9, 2012
 
Hi, I've just been to see a rheumatologist today as referred from my GP in november for having my CCP results come back at 600. I suffer from terrible joint pain and stiffness in my hands, wrist, shoulders and feet, but because the rheumatologist couldn't find any inflammation in the joints in my hands and feet, he doesn't think it is RA, as thought previously. What else could it be? I'm only 24, it's really holding me back physically. I feel like I'm getting nowhere. Anybody that can give me some information please?
blacktess

Poznan, Poland

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#50
Jan 16, 2012
 
Hi Stacey,

I am really surprised by reaction of your doctor.
aCCp is characteristic of RA, especially if the result is over 80, and it is 600 in your case.
Maybe you could also check RF, CRP and X ray of the hands. All your symptoms and aCCP sound like RA, at least for me. Try consulting another doctor.
All the best
JJJ

Marietta, GA

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#51
Jan 26, 2012
 
Anti-CCP is not 100% definitive. I have seen no scientific studies that state a positive anti-CCP is definite for RA. Highly suggestive and likely, perhaps, but they still find exceptions.
hassan

Jeddah, Saudi Arabia

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#52
Feb 8, 2012
 
my RF 159 and ANTI ccp 35.9 yoyr opinion ,please
cynthia

Weston, MA

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#53
Feb 8, 2012
 
hassan wrote:
my RF 159 and ANTI ccp 35.9 yoyr opinion ,please
Things maybe different in your country..My anti ccp was over 800 and I was put on methrotrexate which is helping me....Ask your Doctor. I do know that the Anti ccp is suppose to be a negative figure. so you do have some RA...
Shankar

Tirupur, India

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#54
Feb 15, 2012
 
This is very importend
TAP

Amarillo, TX

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#55
Feb 19, 2012
 

Judged:

1

Phil McNaughton wrote:
Mainly to Doug...
You say that higher levels of Anti-CCP do not, necessarily, correlate to a worse prognosis.
Seriously, I am trying to get an honest answer from someone, can I expect a potentially serious and severe prognosis with an Anti-CCP of 1600?
The anti-ccp is significantly elevated and you most likely will be diagnosed with RA soon. However the most important thing to know is which RA antibodies are positive. People with Positive RF IgA and/or POSITIVE RF IgM are considered to have a "more aggressive type of disease" and if not treated early or properly then those people do have an increased risk for "early or premature death".
So again remember if you have RA ask your doctor which serotype you are.
Lastly, the most important thing to know about RA is that it is obviously your body "attacking itself" and the disease causes "INFLAMMATION" throughout the ENTIRE BODY not just joints. So treatment is centered on suppressing the immune response and decreasing the inflammation. Example: Prednisone is for Inflammation and immunosuppression. Plaquenil, Methotrexate, Enbrel, and many more are known as DMARD's which stand for Disease Modifying AntiRheumatoid Drugs. Thirdly, anti-inflammatory drugs like Aspirin, Advil, Motrin, Aleve, Naproxen, Celebrex, Feldene, etc. help with pain and swelling or inflammation. So proper diagnosis is important and then just know that for the BEST outcomes a Rheumatologist is best but additionally an Internal Medicine Doctor is very helpful is assessing and diagnosing RA plus treating pain properly and sufficiently and then monitoring for any other changes within "other vital organs" such as the vascular system, the heart, kidneys, etc.
I just want everyone to know, that RA IS TREATABLE and IS NOT the end of the world but it is not a one size fits all kind of disease where one single pill fixes everything. If you smoke STOP, if you dont exercise START, if you're overweight or obese DIET/CUT CALORIES if you are unable to exercise due to pain etc. Then medication should consist of an anti-inflammatory drug, a DMARD, and then a narcotic analgesic to assist in tolerating the remaining pain. But listen to your body, and your doctors, and make lifestyle changes that are healthy and positive. GOODLUCK to everyone. Hope this helps someone.
morwas

Benghazi, Libyan Arab Jamahiriya

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#56
Mar 3, 2012
 
three month ago i feel terrible pain in my joints
this case became worst i went to the doctor he advice me test anti-ccp and RF the result both strong positive anti-ccp 2300 RF 68 i want a good adivce to to get better i really suffer from the pain please help me .

thank you

Since: Feb 12

Stillwater, MN

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#57
Mar 3, 2012
 
Hi James,
No nothing yet. Went back to my last rheumy in September and he blew me off completely and said tendonitis from texting!!! Jerk! He ignored all previous testing and his own notes about which joints had synovitis and deterioration. I was pretty ok all winter but two weeks ago two fingers started again and now it's so bad I am fairly depressed. Most of my fingers hurt, my big toes, right ankle and right wrist. I braided my daughters hair last Saturday night and sweated the whole time from the pain... the next morning I could close my hand for a few hours and was useless the rest of the day. I have an appt with a new rheumy at the end of March. I hope to get some answers soon or at least some help.
James wrote:
<quoted text>
Hi! Did you ever find out what was going on with your symptoms?
Barbara

Pfafftown, NC

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#58
Mar 14, 2012
 
I'm trying to find out what my results mean but the results I'm seeing posted here are far different from mine. The ccp is 10.6 with the normal range being 0.0 - 5.0. People here are referencing 250? Also my RF is 61 with the normal range 0-20. So what does this mean? Thanks
angie

Lexington, KY

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#59
Mar 15, 2012
 
I have been diagnosed and treated with plaqanil for 6 monts now . I do have big knots in my knuckels and alot of pain. However, i was looking at my anti ccp level and it was only 16. Does that mean I will get better? Does it mean I was misdiagnosed?
VJC

Suffield, CT

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#60
Mar 25, 2012
 
This is to anyone having foot pain trouble walking with RA, go and buy FitFlops not cheap flip flop but brand name "FitFlops" this is the only way I can walk. You can order them online at, Sole Provisions, Footsmart or Zappos. This truly was a miracle for me, I would be a cripple without them. I hope this helps someone.
pauline

Montgomery, UK

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#61
Apr 28, 2012
 
(QUOTE)FROM PAULINE quote /I can sympathise with you Phil ive had RA for 26 years high dose of methotrexate and tried 2 sorts of biologic drugs now going onto Rutixamab but in meantime having lots of replacement joints so cant take biologic therapy obviously i hope when i get on it Rutixamab works and hang in because your not alone I know what your going through.

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