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  • #373849
    m.
    Participant

    Just to clarify…

    The Historical Protocol can be accessed from the main page, and is a great source for the big picture & protocol basics.

    https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/184.html

    Some quotes:

    There is no single protocol which works for everyone; each patient is different.

    Patients with severe or long-standing disease are started on a low dose of oral minocycline or doxycycline ranging, according to patient tolerance, from 50-100 mg. or tetracycline 250 mg. once daily one to two days per week. Titrated to patient tolerance the dose should be increased to a working standard dose of minocycline or doxycycline 100 mg once daily or tetracycline 250 mg. twice daily Monday, Wednesday and Friday.

    For patients with less severe or early disease, the IV or IM treatment may not be required as they experience the same result using oral medication exclusively. The optimum standard dosage for these patients is minocycline or doxycycline 100 mg. once daily, Monday, Wednesday and Friday or tetracycline 250 mg. twice daily Monday, Wednesday and Friday.

    Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 100 mg dose. That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage. Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch Herxheimer reaction of clinical significance.

    A good starting point is identifying which connective disease(s) you are presenting. Long standing disease? Early disease? Which antibiotic? How much? What dosing schedule?

    #373850
    ellie6
    Participant

    Thanks so much for all the help and advice. Unfortunately my doctor needed to cancel appt for today. Very disappointed after waiting for this for awhile. Not sure when it will be rescheduled 🙁

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