Thursday, November 13, 2008 Lisa asks

Q: My anti-ccp is more than 250 but ra factor is low and sed rate is low does this mean i am severe RA

My anti-ccp is more than 250 but ra factor and sed rate is low the Doc has got me on 15mg MTX a week and now they want me to take Humria cause still having lots of pain in my feet said I had RA in May of 08.....does the blood test indicate that I have server RA.

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1/29/11 10:40pm

Hello - I see your post was a couple years ago, but I'm there too.  I have an antiCCP level of 250, my RA factor which was low but positive 6 years ago has now disappeared, and my sed reate is just about normal (for the first time).  But I have finally ended up with more than a minor infection.  I just had surgery to have an abscess of MRSA bacteria removed - not fun!    Anyone else had this happen?

 

I only took about half the prescribed Enbrel in December because I felt something was becoming very wrong and I couldn't figure out what.  Usually my gut is right, and this was no exception.  I finally had a boil pop out under my left armpit on New Year's Eve (nice, huh?).  Had that lanced 4 days later (took antibiotics in the meantime). But there was already a small hard lump (about 1/2 inch by 1 inch) underneath/around the boil.  And after I'd finished another 10 days of sulfa drugs (they had tested the culture and this was what worked), I went back to my doc and said, what about this lump?  And he said, it should come out, so it was operated on the next day.  Since there wasn't much left of the boil, the surgeon didn't even seem to think it was necessary, but the culture of that speciment (now I had 3/4 inch by almost 2" oval removed, from the skin down!) showed "foamy macrophages and multinucleated giant cells" which I googled and it came up with resistant bacteria/abscess stories.  Yup.  Yuck!)

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1/30/11 10:44am

Hello Ellen I hope everything is doing better for you now.I am still doing ok on the meds I take I had to skip Humria for a while due to sinus infections and I could tell the difference had a lot of discomfort in my shoulders,knees,ankles and hands been trying to get back to my walking, spin class and it's been up and down with that this cold has been tough have gained a little weight so it gets a little frustrating plus going threw menopause.I still feel lucky compared to some people that seem to be alot worse with this disease than me; even though here lately I have felt worse in fact did my blood work 2 days ago wonder if there will be a change sometimes I wish it would show it cause it is not in my mind and I also just hired a maid to come and clean my house every other week to help out,I thought I would never do that but I just can't do it anymore I hope it will help me feel less stressful cause I work 9hr days and I have a 10 yr old and at 50 years old it gets to being a lot but I just keep my head up cause I know it an be a lot worse.Smile

 

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1/30/11 6:24pm

Good for you!   take care of yourself...

I think it may be time for me to be on a different med so I will be talking with my doctor soon - I hope!  My next appt was scheduled for March, but he said "unless you need to come in sooner."  Well, the time is now.

 

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11/14/08 3:19pm

Everyone is different. Hard to say weather you RA is severe or not. It really doesn't matter does it. You are in pain and need help.

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11/16/08 4:53am

many people with RA begin the trek seronegative (RF neg) and later become positive.  Having a high anti-ccp suggests the potential for severe aggressive disease and possible future disablity.  current protocal is to treat early disease aggressively to avoid future suffering and recent studies show that many people can acheive remission if given aggressive early treatment during the first year.  You can always get a 2 nd opinion, but you do not want to risk missing your, "window of opportunity" as you are recently diagnosed.  I have never had an abnormal sed rate or CRP test, yet have aggressive disease.  I asked a mayo rheumatoid doc why my inflammatory indicators are always normal and he said, "I have seen several patients like you with severe disease and normal inflammatory indicators".  It fooled 3 other rheumatoid docs who did not have his experience and delayed my treatment to my detriment.  I would follow their advice and not read too much into the bloodwork.  It presents and effects everyone different.  Enbrel rocks.

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9/28/10 4:57pm

I too have a anti-ccp that is off the charts but every other blood test looked completely normal. I am currently on 15mg MTX and Enbrel. It was not until I started the Enbrel that I felt better. I had a significant amount of pain in my right foot and pain that would come and go in other areas. I was taking (20mg MTX) but have slowly gone down to 15. I would like to get completely off of the MTX so that I can have a second child. I am 30 years old. The symptoms started about three months after having my first child. 

Anyhow, I would say that it is quite possible to have an aggressive form of RA with no other indicators other than anti-ccp. I feel for you and hope that you are able to get pain free. 

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By Lisa— Last Modified: 01/30/11, First Published: 11/13/08