Home Forums General Discussion RF going down but still high anti CCP??

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This topic contains 7 replies, has 5 voices, and was last updated by  lynnie_sydney 7 months, 4 weeks ago.

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  • #458499
    Airen
    Participant

    In my 3 years of having RA I’ve never had my anti CCP numbers looked at. My dr and I have been so pleased with the steady decline of my RF now 13.4 and in the “negative range” however my anti CCP is still very high at 249. Now it’s never been looked at before so we don’t have anything to compare it to but what does this mean? Does that mean RA is still active? Will this number ever go down? Please help. Do I need to be concerned with this number?!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #458609
    jasregadoo
    Moderator

    I can’t advise at all…I’ve never had mine tested I don’t think. But I think rather than getting scared by it, I would focus on how you’re FEELING. What about pain, exhaustion, etc. If those are all managed, then I wouldn’t stress TOO much about numbers when you’re not sure what they mean.

    #458613
    Airen
    Participant

    Thanks for commenting Jas. I agree, I do need to focus on the good but I also want to me sure there isn’t something else I need to think about or work on. I am mostly feeling quite well. How are you feeling?

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #458614
    Spiffy1
    Participant

    Minocyclene can cause easy bruising. Hang in there! Great RF!

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 28 as of September 2016
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #458622
    Maz
    Keymaster

    Hi Airen,

    If you run a search in the search box above using key words, “Anti-CCP Moxatag,” you’ll find a few past posts where I describe how effective this long-acting penicillin was at reducing my anti-CCP over a ten month period by 40 points a month, regular as clockwork. Anti-CCP autoantibodies have been correlated with gum disease in the medical literature, as p. gingivalis has been found to cause the citrullination process. Other bugs may also have this capability, because anti-CCP has also been associated with other diseases/infections, for instance. It can be elevated for a decade or more prior to disease onset, which is why it’s generally used just as a diagnostic and prognostic indicator of disease severity (joint destructive disease) in RA, but rarely checked again. This article is interesting if you have a moment. Some interesting statements in it:

    Does a positive anti-CCP test identify a distinct arthritis entity?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #458623
    Airen
    Participant

    Hi Maz, thanks for your reply. I’m always interested in your insight and others who have been here a long time. So, would you recommend asking about trying the penicillin? Was it beneficial to you? Other than bringing those anti CCP numbers down, did it make you feel better? Does it stay that way or is it an ongoing battle to keep these numbers down after they reach normal range? Is it safe to take the penicillin long term, over several months? What kind of side effects or possible risks are there? What would happen if I chose not to address the anti CCP with penicillin? Does mino help these numbers, just at a slower rate?

    Thanks so much!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #458627
    Maz
    Keymaster

    Hi Airen, just replied to your PM. Yes, when my numbers came down, I began to feel better. In my case, my RF and anti-CCP seem to correlate with how I feel (and elevated ESR and CRP), but I know for others this isn’t always the case. My RA battle has been a bit unique, because I have trouble metabolizing certain drugs and keep winding up with drug-induced lupus – a major reason I can’t use the usual RA drugs, like sulphasalizine, penicillamine, Humira or Enbrel, and others…all have been associated with DILE. The latest incident, after my thyroidectomy was with a beta blocker that caused very severe DILE. Of course, once the DILE is recognized, I have to come off the offending drug, but inevitably there is rebound. Now I know my DILE proclivity, I just have to be careful to research any drug that has been correlated with DILE and stay well away from it. I think I got to the other questions in the PM, Airen, but let me know if not. I always tell people not to compare notes with me, coz my unique drugs reactions aren’t universal and, having the RA/Lyme mix certainly throws a spanner in the works!

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #458634
    lynnie_sydney
    Keymaster

    Hi Airen
    My anti-ccp levels have always been high since tested – > 600. Whilst my RF has moved down over the years, the anti-ccp hasn’t changed. Because that test wasn’t routine when I was first diagnosed (in the late 90’s), I don’t have a baseline from which to monitor it. Along with CR-P and ESR, my RF levels DO seem to reflect the level of rheumatic symptoms in me. But the anti-ccp seems to stay the same. However, I don’t worry greatly about this except to hold in my awareness that I am probably going to need to continue with a maintenance dose of abx, however I’m feeling. And I’m pretty symptom free.

    I have been on a penicillin for a couple of years as part of my abx mix – Amoxycillin and Potassium Clavulanate, which aids in absorption of the cillin. It doesn’t seem to have impacted my anti-ccp levels.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

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