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  • #304868
    SandiS
    Participant

    Here are my latest labs after two years on minocin:

    Sed rate – 10 (22 in 2008)

    CRP – 1.1 (1.63 in 2008)

    Anti CCP- 96.5 ( 189 in 2008)

    My rheumy said the anti CCP would never come down. I love proving him wrong. Of course he will say it is still extremely high. He also said I would be in a wheelchair by now and I’m not. In fact I am doing so well he is very puzzled by it. He still refuses to believe the Minocin has anything to do with it. I am still trying to educate him.

    Sandi

    #352473
    Maz
    Keymaster

    @SandiS wrote:

    Here are my latest labs after two years on minocin:

    Sed rate – 10 (22 in 2008)

    CRP – 1.1 (1.63 in 2008)

    Anti CCP- 96.5 ( 189 in 2008)

    My rheumy said the anti CCP would never come down. I love proving him wrong. Of course he will say it is still extremely high. He also said I would be in a wheelchair by now and I’m not. In fact I am doing so well he is very puzzled by it. He still refuses to believe the Minocin has anything to do with it. I am still trying to educate him.

    Sandi

    Sandi, congrats on the terrific labs – NORMAL inflam levels! YAY! 😀

    As for the anti-CCP levels, can only share my experience in that they have come down both while on a combo of mino and azithromycin and also while on a combo of Moxatag (extended release amoxicillin) and fluconazole. This leads me to believe that probably the azithromycin and the Moxatag (interestingly, both used for strep), were what probably led to this lab coming down. In fact, while on Moxatag, it came down by 40 points a month, like clockwork (it started out at 235). This isn’t to say that anti-CCP may elevate again at some future point…that’s always possible (re-infection?), but it’s clear that these antibiotics did have some effect on my levels.

    I think the trouble is that conventional rheumatological thinking is that this lab is only useful for diagnostic and prognostic purposes, as it’s never expected to move on more conventionally-used immune-suppressive medications. There were studies done (if memory serves, on Remicade), posted a couple years ago, that followed both RF and anti-CCP for a large cohort of RA patients over an extended period and, while there were some reductions in RF, anti-CCP only came down a tad in the initial treatment phase (going completely on memory here, but seem to recall a 10% reduction) and then leveled off and remained the same. This would indicate that it is not the anti-inflammatory props of these two antibiotics that caused the decreases in my anti-CCP.

    Both RF and anti-CCP are antibody tests…so, logically, there should be some antigen to which they are responding, creating immune complexes (antibody/antigen immune complexes). However, in the conventional box, they aren’t looking for causes and these labs are considered the result of idiopathic disease…no known cause. Therefore, why look any further? Most rheumies will not re-test these labs after initial diagnosis, because it is not considered helpful. Yet, for doctors who do believe in infectious causes, these labs can provide important info that is worth monitoring…because they offer insight into degree of disease activity caused by underlying infection and whether or not the protocol might need tweaking. All in all, it’s probably just a matter of what perspective a doctor is coming from.

    Great to hear your news, Sandi, and thanks for sharing!

    #352474
    Kim
    Participant

    Great news, Sandi! 😀 Now, just let us know when he tells you that you went into “spontaneous remission” ………..love that one!

    Take care…..kim

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