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  • #308545
    MLTelfer
    Participant

    Over two years into this, my son seems to be doing well on AP. Maybe he just has a mild form of PsA or the AP is holding this in check. He was able to go to one Celebrex for a few days and even skipped it a day. Of course, the disease festers and he is back to the Celebrex twice a day along with mino twice a day and supplements.

    The latest issue is bone marrow edema(BME) in his sacroiliac. Now this is a problem because it is a precursor to joint damage. I have a simple model I follow: Educate>Treat>Manage>Monitor. By educating myself on the axial elements of his disease I found that regular x-rays do not show damage in the sacroiliac until 10 years after disease starts, therefore I asked for an MRI (monitor…only because I educated myself). The MRI turned up the BME. Now I have to develop a treatment to address the BME, try to manage it through a targeted treatment and then monitor its effectiveness.

    I am educating myself on how the bone functions and how the cytokines in the immune system are expressing themselves in his marrow. Damaging his spine is absolutely not an option. There is a lot to learn here. I may opt for two 500mg infusions of Rituxin if my rheumatologist will go along with it. So far it appears the edema is pooling of B cells and Rituxin may ablate the B cells, and return the marrow to normal while not affecting adaptive immune characteristics. There are specific cytokines and interleukins in play here that different drugs can manipulate so I am looking at drug combinations that might work. If I can find a way to stabilize the marrow I will then continue with the treatment plan we are on. If not, it’s time to up the ante. Soooo….as long as the arthritis is in check for now, I am going to discuss not how to treat arthritis with my rheumy, but how to treat BME and see if there is a specialist we can go to for that.

    #373765
    PhilC
    Participant

    Borrelia burgdorferi, the bacteria that cause Lyme Disease, can infect bone marrow.

    See:
    Bone marrow manifestation of Lyme disease (Lyme Borreliosis)
    Bone Marrow as a Source for Borrelia burgdorferi DNA

    If your son does have Lyme Disease, minocycline alone is not an adequate treatment for it.

    Here is some info that may be helpful:
    Kills Lyme Germs: A Brief Antibiotic Guide.

    Just another “angle” for you to consider…

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #373764
    marypart
    Participant

    Great news. Glad to hear your son is improving.

    I second Phil’s comments, and also wonder if whatever infection is in play needs a more aggressive combination of antibiotics. Has your son had any IV antibiotics?

    If it is Lyme, or any number of other infections, higher doses and/or combinations of antibiotics are necessary to kill off the “persister” cells that survive some antibiotics and come out to re-infect later.

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