Can anti-ccp levels change to normal?

[amyid]

Hey all,

As I posted earlier, I felt cruddy this past two weeks.  Flaring like crazy in hands, knees and feet.  For me flaring is intense stiffness and pain in the effected joints along with extreme fatigue and feeling feverish (while never having more than 99.9 F temp).  I don't swell really and don't get red hot joints. 

Long story short, my GP's office ran blood work last week cause I felt crummy and had slightly swollen lymph nodes.  She also said she was going to run another ccp.  My last anti-ccp test in March came back at 59.3 which was a high result.  This one (I just got a lab sheet print out in the mail) says: “Cyclic Citruline Peptide = 0.59” with low being <5.01 U/mL.   HOW CAN THAT HAPPEN?  How can I feel like I am flaring like crazy and have totally normal labs? CAN a CCP test go to normal????  Does that mean I am in remission...then why do I ache, get stiff, have fatigue?Do I not have RA?  Was the first test wrong....  Could the AP therapy have moved my ccp levels to normal?

Any help would be appreciated!!!!!

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Lizz]

Amy- everybody is different, I can only speak for myself. My anti-ccp is steadily going down, and I have been on AP for 15 months. It stayed at the high level for many months. Remember too, you had IV's recently, and there was a big discussion of all the stress you're under, soo sorry. I'm going to take the glass half-full approach – you're labs are going down because of the AP protocol and the way you feel just could be toxicity, coming or going out of your body, and the continued stress you are under. Lynnie would tell you also to check your diet, I do the blood – type one to reduce inflammation. I'm sure this will pass, be patient and know we are all here for you!

 

 

______________________

Lizz RA 11/07, AP 5/07

[Maz]

[user=439]amyid[/user] wrote:

Could the AP therapy have moved my ccp levels to normal?

 

Hi Amy,

Well, my own experience in just the last few months has been the same. My anti-CCP in early May was >60. My doc reckons it was probably much, much higher when this all started. However, the lab my bloodwork goes to only give an upper reference range of >60, meaning severe disease and <20 meaning negative. Well, by mid-July, it moved below the >60 mark for the first time to 45! I was pretty impressed in this downward leap within 2 short months – approx a 35% decrease.

I found a 78 week study on Remicade (one of the infused biologics) that monitored a number of patients during this time frame for anti-CCP and RF. I think the results speak for themselves. In the early months, anti-CCP came down by about 25%, but remained at that baseline for the remainder of the study and didn't come down any further. Rheumies often don't retest anti-CCP, as it's just considered to be a prognostic indicator of degree of severity and a guide as to how aggressive treatment should be with the usual immuno-suppressants.

A few APers have commented on their anti-CCP coming down within a relatively short time…just go to the search box and type in “anti-CCP” and all the posts should come up.

I read somewhere that anti-CCP can be elevated for a number of years before disease onset and, generally speaking, this test seems less sensitive to marked changes in physical symptoms…the RF seeming to be more reflective of how you're feeling on the day of the test.

That said, I was elated that this test number came down! I take it to mean AP is working and working well. Circulating antibodies are diminishing….whatever these antibodies may be.

Amy, you're going through a really stressful time, so it may well be that you are flaring now. However, it can also be very difficult to differentiate, I find, between a flare and a herx. I, personally, don't think there is much difference. My way of rationalizing this is that the fight or flight response is in full force when we're under stress…in a healthy person this probably affords some immune suppression when the immune system is on high alert. However, for someone who is chronically ill, the adrenals are fatigued and, with an immune system on high alert, probably some die-off is occuring, but we just don't get to enjoy the effects of the body's natural cortisone…there isn't much to go around.

It's sort of like when a woman is pregnant and she enjoys a period of remission, because the level of circulating steroidal hormones is so high and immunosuppression is also high (bugs running rampant), as a result, to ensure the fetus is not rejected. As soon as the baby is born, these steroidal hormones plummet and a post-partum flare in disease symptoms occurs due to the high accumulation of pathogen load during those 9 months… and the immune system kicking back in full force.

This may or may not be a wholly accurate depiction, but I think the mechanisms are pretty similar. In effect, what may be happening is that stress = flare, but being on mino ensures die-off, eliciting a greater herx. Doc Brown would often manage flare flares with IV clindamycin to lower the antigenic, hyperallergenic response and my guess is that he probably lowered the dosage to elicit softer herxing, thereafter, till everything stabilized again.

Of course, most of this is purely speculation on my part. Someone here may have formulated quite a different theory! 😉

In any case, CONGRATS on the normal anti-CCP reading!!!! This is fantastic news and bodes well for prognosis. Getting through this stressful period and managing your flare/herx is likely of more immediate concern to you. Hang in there…this too shall pass and you'll be back to feeling better again. Just do what you can to keep the temporary inflammation down, eat well, drink plenty, flush out those toxins and rest as much as poss.

You're in my thoughts, Amy.

Peace, Maz 

[Michele]

Hi Amy,

That happened with my blood results after I had my IV's in Iowa with Dr. S too. You are describing exactly what my symptoms were, too!!!!
I was no longer looking like I had RA with my blood work, but I was in horrible pain. My PCP still maintains that I have RA. And today I sure feel like it. I'm in the experiment with dose sizes of MP phase I and today my arthritis is the worst it's been in a while. :headbang:

I don't have swelling or redness…just pain. But today, I think my knees and knuckles look puffy.

Have you called Dr. S to talk to him? If I recollect, he did not put much stock in those blood markers, only your symptoms.

Hang in there. This journey is wearing.

Michele

[Tiff]

Hi Amy,

My strong postive (164) was negative at my last testing in June, which is a good year and a half from that first test.  Like Maz said, the CCP is supposed to have more consistency over time, so this makes no sense.  I am still having plenty of arthritic pain, just like Michele.  Highly migratory pain with very little swelling.  I don't know what to make of it, and I don't think my doctor does either.  It is enough to keep me hopeful about AP and MP in general.

Keep defying the odds, that's what I say!

[superperroRA]

From 59 to 0.59, only a shift in the decimal point. Coincidence or lab error or change of units?

[lynnie_sydney]

Amy – does seem strange that they are the same numbers except for the decimal point, so may be worth checking with the lab if you can. Other than a mistake, it is well known that lab results can sometimes improve before clinical symptoms and sometimes vice versa. There is something on main web site re this – cant give you a link because it seems as if it's down at the moment. However, you'll also find this at http://www.rheumatic.org in their FAQ section on main page. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[amyid]

Lynnie,==   I went to the FAQ section at Rheumatic.org and couldn't find it.  I am a bit fuzzy this a.m. 😛 so maybe I missed it…do you remember what it said?

 

Tiff==      Wow, from the 160's to neg.  that is quite a change.  Does your Dr. still say you have RA?  Or is your Doc just boggled by the result, but not putting much stock in the test?

Michele==  It seems we are walking the same path.  Sorry to hear you are having pain.  I hope it subsides quickly.  Thanks for letting me know your story.  It always helps to know you aren't the odd-ball!

Maz=== Thanks for the positive outlook.  I was excited that it was normal, but then wondered if that meant the RA was being pushed down by the AP…I need to understand more about what CCP is and how it can be low when I am aching.  For now I will say it is from the AP!

Lizz== Thanks for sharing that your numbers went down, too.  I guess the theory that your ccp is what it is, is wrong:?. 

I called my GP clinic where the lab was.  (Note: my other CCP last March was run by my Immunologist at another lab about 30 miles away, in a whole other Hospital system).  Still,  I was curious about the significant drop, and the coincidental 59 to .59).  The lab rep is going to forward the info to my main doc and have them call me today.

 I am worried about talking to my Rheum about this…will she say I was misdiagnosed??  I certainly meet all the other RA criteria (except swelling and redness -which she already addressed).  I just don't want to get back to point A–“who knows what is wrong with you” line and dismissed from the doctors.   But realistically, with all my symptoms, I would doubt that one test would change a diagnosis…just not very trusting of docs these days.

I am very grateful to you all however….thanks!

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Tiff]

Amy,

It is quite a change.  I even wondered if my last test was a mistake, too.  When I go again I will talk to the doctor more about it, but that won't be for a while.  I have never gotten a definitive RA dx.  They call my form of arthritis Palindromic Rheumatism.  It is thought to be an abortive form of RA, but for me I suspect what has always made it abortive is the fact that I have been on ABX for the entire time.  My doctor is boggled.  She doesn't even pretend to have the answers.  Kind of refreshing, really.  She is content that I am on rather mild medications and have not sustained obvious damage so far.  I am not in remission, however, as I continue to have a lot of migratory pain.

Getting a specific diagnosis doesn't seem to help find answers as much as we would think.  In fact, for RA it often means the doctors just stop looking for answers.

[Rosey UK]

Hi 

Can anyone  tell me what CCP is? we are tested for ERS and CRP so forgive me.

Rosemary

[lynnie_sydney]

Blood tests should be performed routinely to determine the activity level of the disease and to measure improvement. Some blood values may worsen during the early stages of the treatment. If the numbers improve, there is improvement in your disease although you may not feel it at first. There is often a time lag between how you feel and your lab results. A change in either one often means you can expect a change in the other.

Amy – this is copied from RB's main site, now up and working again. It's in the brochure sheets section under 'Things to do if you are not seeing Improvement'. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Rikki R]

I have recently been somewhat diagnosed with PR.  I have so many questions.  I work for an Internest, who is also my doctor.  He is boogled.  My ANA is back and forth positive & negative. My Sedimentation ratee has been as high as 56, but usually runs @ 12. I have pains somewhere all the time mostly in my hands, top of my feet, low back, & hips.  I seem to always have neck pain & headaches.  I have had 3 major flares that have all been proceeded by either a nose bleed or bleeding gums. Neither of these I have ever had before October of last year.  All I have been treated with is Steroids, anti-inflammatories, & analgesics. I'm sick of hurting & sick of Prednisone!!! Any suggestions would be greatly appreciated!! I would love to know what your firt signs where and any treatments that you have had…..  I'm lost!!

Thanks for anything you can offer!!

Rikki:)

[lynnie_sydney]

Rikki – I have answered you more fully in a PM. You are in the right place, even though PR is alot weirder than classic RA. Hang tight and welcome to the Board. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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