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  • #454265
    purplepanda
    Participant

    Hi, everyone.

    It’s been a while since I’ve posted, but I’ve been checking the forum.

    I just had a blood draw for my rheumy who does not know I’m on AP, and my SED & CRP were both well within normal range. I am on 5 mg prednisone daily and was on 7.5 mg Mobic once daily when I had the blood draw. He just took me off Mobic due to high BP issues. From my PCP, I asked for a RF test and it has dropped to 41. The rheumy refused to test my RF & said once it’s positive, it’s always positive, so no need to check it. But it has come down 100 points since starting AP.

    Rheumy said he would not ask me to take a traditional DMARD at this time because my inflammation markers are in the normal range.

    Do you think the prednisone & Mobic made my SED & CRP decrease to within normal limits, or do you think it could be the AP?

    I started AP in May of 2015 (100 mg MWF for several months) & tried to increase to 100 mg daily & 100 mg BID in October. I don’t take mino twice per day every day, but several days each week I do. I have a lot of difficulty timing pills with food, without food, supplements, meals, etc. I’ve also had two 5-day clindy IV series, one in May & and one in September.

    Just asking for thoughts & realize no one has a crystal ball… I was (maybe wrongly??) Very excited that my RF numbers went way down.

    Thank you. Best wishes to all.

    11-20-15: Off Mobic. No NSAIDS.
    10-14-15: Working toward Minocycline 100mg BID. Able to "lock" my knees when standing now!
    9-14-15: 2nd Clindamycin IV series. Still on 5mg Prednisone & 7.5 mg Mobic per day. Swelling greatly reduced in knees.
    8-15-15: Started Minocycline 100mg BID MWF to present.
    5-25-15: Started generic Minocycline, 100mg MWF. Tried titrating to 100mg BID MWF over a month & went back down to 100mg MWF.
    5-18-15: 1st Clindamycin IV series. Dropped Naproxen, added Mobic.

    #454267
    Maz
    Keymaster

    Unfirtunately, it will be hard to know for sure how well you are responding to AP until you are able to taper off the prednisone….unless you were taking this prior to starting AP. Is it your goal to try to do this, PurplePanda? It can be a tricky business coming off pred and can take a lot of patience due to the inevitable rebound. However, once a person is no longer dependent on their immune-suppressants, it is much easier to determine response to AP and not at all uncommon for autoantibody markers, like RF and anti-CCP to come down. Rheumatologists tend to just view these markers as diagnostic/prognostic markers and these are not expected to improve. However, doctors who are experienced in using AP use these markers as infection markers and re-test at intervals to monitor progress on the therapy. Interestingly, my anti-CCP did improve on tetracyclines, but it was when I switched to a penicillin/diflucan combo that my anti-CCP came down by 40 points per month. There was no doubt that it was the cell-walled infection that was responding to the penicillin/diflucan therapy…the autoantibody reductions were like clockwork! RF does come down with immune-suppressive therapies, but anti-CCP is less responsive and changes little.

    #454272
    purplepanda
    Participant

    Thanks for responding, Maz. I hope you are doing well. Yes, I plan to taper from prednisone & I didn’t think to have anti-CCP tested. Except for a 5-day 40 mg course of pred 5 weeks before starting AP, I was not on any prednisone. I guess I should ask for an anti-CCP test. I think I got excited for nothing as it sounds as if the pred & Mobic were responsible for lowering my numbers. Thanks again.

    11-20-15: Off Mobic. No NSAIDS.
    10-14-15: Working toward Minocycline 100mg BID. Able to "lock" my knees when standing now!
    9-14-15: 2nd Clindamycin IV series. Still on 5mg Prednisone & 7.5 mg Mobic per day. Swelling greatly reduced in knees.
    8-15-15: Started Minocycline 100mg BID MWF to present.
    5-25-15: Started generic Minocycline, 100mg MWF. Tried titrating to 100mg BID MWF over a month & went back down to 100mg MWF.
    5-18-15: 1st Clindamycin IV series. Dropped Naproxen, added Mobic.

    #454280
    Maz
    Keymaster

    Thanks for responding, Maz. I hope you are doing well. Yes, I plan to taper from prednisone & I didn’t think to have anti-CCP tested. Except for a 5-day 40 mg course of pred 5 weeks before starting AP, I was not on any prednisone. I guess I should ask for an anti-CCP test. I think I got excited for nothing as it sounds as if the pred & Mobic were responsible for lowering my numbers. Thanks again.

    Thanks, PP!

    I think it’s just early days still, that’s all, and it is possible you are responding very well in both labs and symptoms, especially now you are completely off NSAIDs! Yay!!! Great step and def cause for celebration! The best test will come, and you will be completely clear about true progress, once you are able to function without the daily 5mg of pred. Getting off it will take a lot of time and patience on your part and may cause you to feel like you are going backwards at times, but others have done it successfully and no reason why you won’t be able to, as well! ?

    The reason I say, “early days,”is because flares can and still do happen until sustained remission is achieved. This is because when immune suppressants are no longer used, mino alone will not prevent disease flares. However, patient experience, on the whole, has repeatedly demonstrated that a good indicator that the treatment is working is that flares will be fewer, less intense and generally shorter in duration, until they fizzle out completely. Most folks find it’s not worth trying to taper off pred until well-stabilized on the mino dosing schedule that they’re aiming for.

    #454298
    purplepanda
    Participant

    As always, thank you, Maz. You’re always right there to help everyone out. I will keep chugging along! My best to you & everyone.

    11-20-15: Off Mobic. No NSAIDS.
    10-14-15: Working toward Minocycline 100mg BID. Able to "lock" my knees when standing now!
    9-14-15: 2nd Clindamycin IV series. Still on 5mg Prednisone & 7.5 mg Mobic per day. Swelling greatly reduced in knees.
    8-15-15: Started Minocycline 100mg BID MWF to present.
    5-25-15: Started generic Minocycline, 100mg MWF. Tried titrating to 100mg BID MWF over a month & went back down to 100mg MWF.
    5-18-15: 1st Clindamycin IV series. Dropped Naproxen, added Mobic.

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