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  • #466961
    Maz
    Keymaster

    Hope it helps, Coco! Pls come back and let us know how you’re doing!

    #466959
    Maz
    Keymaster

    Any chance you had Covid or any other infection of late? I’ve had dental cleanings in the past that can set off a flare. Ugh

    I also take NDT (NP Thyroid) and find I need my Free T4 to be mid-range and Free T3 to be in upper quartile of range. TSH is usually very suppressed unless I get early morning labs drawn before I take morning dose. The T3 in NDT can falsely elevate thyroid labs to look normal otherwise.

    Some folk find adding a macrolide to doxy does the trick or rethinking mino dose.

    Yes, diet can really affect RA flaring as evidenced by recent emerging research. Without attempting an exclusion diet, it might be hard to unravel which food offenders may be a root cause.

    #466957
    Maz
    Keymaster

    Any recent thyroid and RA labs? Do you take NDT for thyroid replacement, generic or brand-name levothyroxine/T3? Being hypo- or hyperthyroid can creep up and inflammation can block T4 to T3 conversion so these labs need a close eye during these times.

    If not thyroid and everything is in good order with those labs, have you had any other routine labs run for RA recently? ANA, RF, anti-CCP, sed rate, CRP, complete metabolic panel, CBC?

    If you’ve been on mino for over 5 years, have you talked with your AP doc about adjusting your protocol? Some people find that temporarily changing their dose, switching to a diff tetracycline snd/or adding a secondary abx can make a huge difference. Back in Dr. Brown’s day, he treated flares with IV clindamycin.

    #466956
    Maz
    Keymaster

    Hi coco, what was your previous User ID? Was it Cocomo? If so, I can reset your password but it looks like you were using a diff email address in 2018, which might be the issue.

    #466949
    Maz
    Keymaster

    Hi Coco,

    Are you working with an experienced AP doctor? How long have you been on AP? Were you in sustained remission before this flare? Changed generic brands recently? Recent RA labs? Any co-morbities- e.g., thyroid imbalance or other hormone shifts? I find my hands get boggy when my thyroid levels are out.

    #466927
    Maz
    Keymaster

    Hi Curly,

    Sorry to hear about your flare, but nice to see you here again!

    In case you don’t have a copy of the book, I’ll share what Dr. Brown did for his RA patient, Carol Lange, for you (p. 295) in case you don’t have a copy of Henry Scammell’s book or for newcomers who may be interested – also, by way of update, I had it on the good word of Pat Ganger (co-founder of RBF), a few years ago, that Carol Lange’s RA had been in remission for many years and that she only suffers from clicking in one knee:

    In 1988, Carol Lange experienced a severe flare-up of rheumatoid arthritis, a disease that her doctor, Thomas McPherson Brown, had been controlling with antibiotics for the previous twenty-four years. Dr. Brown knew that flare-ups, in common with fast-moving or severe disease as well as all forms of scleroderma, require aggressive intervention. As usual, he started her off with 300 mgs of clindamycin administered intravenously the first day, then 600 the second and 900 every day for the balance of the week, along with her regular course of oral minocycline, and the flareup slowly receded. (At a recent conference of physicians experienced in antibiotic therapy for scleroderma and other connective diseases, there was a consensus that this combination approach was the most effective in dealing with such extremes).

    Not everyone is working with an experienced AP doctor, however, with access to IVs,

    You’ll find additional info on flares in FAQ #s 25 and 30, here.

    Such situations are tricky to navigate alone, so you may need to do some thinking about whether to switch generics, or even to ask the doc about adding a different class class of antibiotics. Patient experience varies in these regards, and some trial and error may be necessary. Some may find that temporarily increasing their dose (with their doc’s knowledge, of course) does the trick.

    It’s been very quiet on the forum of late, but perhaps others will see your post and chime in with what has helped them? 🤞

    #466909
    Maz
    Keymaster

    Kurylod, welcome and your lists have been sent.

    #466895
    Maz
    Keymaster

    MajorB, just PM’d you the requested lists. Any trouble accessing your PMs just let me know, but you should receive an automated notification with a direct link or, alternatively, you can also access your PMs in your user Profile here and should see a little red flag notifying you of a PM.

    #466893
    Maz
    Keymaster

    Hi MajorB,

    If you let me know which 3 state lists you’d like, or 2 state lists and “most experienced” list (that might require travel), happy to send them in a private forum message to you. Sorry to hear you had trouble with the automated system.

    #466883
    Maz
    Keymaster

    Hi Linda,

    You can search your old posts by typing your user name in the search box at the top of the General Discussion area – Linda L – and then all topic discussions will pop up with your name in them. Any trouble, pls let me know…

    #466880
    Maz
    Keymaster

    Hi Linda,

    See FAQ:39 on the main website.

    Do you have a copy of the Henry Scammell book? Dr. Brown talks about the anemia experienced by RA patients and that very often it resolves over time after being on AP (provided it’s not caused by co-morbidities e.g., hypothyroidism, stomach/gut ulcers, etc., that require other interventions).

    Have you looked back at your old posts here on the forum? There are quite a few relevant discussions you might like to re-read.

    #466879
    Maz
    Keymaster

    Hi SK,

    I’m not a scientist, just a fellow patient, so my lay understanding of the extensive properties of tetracyclines to modulate immunity in SD is limited. SD research is, at best, thin on the ground and research like the above article just comes at a trickle. However, if you click the following link, in the Resources/Journal section of this website, you should find the articles posted informative in this regard:

    Resources/Journal Articles

    Regarding your first question and why tetracyclines have been sidelined, you’ll find this info in the first few chapters of Henry Scammell’s book, The New Arthritis Breakthrough. Nothing much has changed since the book was published. What I always found intriguing is that as far back as the early part of the 20th century, rheumatic diseases were believed to be caused and driven by chronic, stealth infection. However, with the advent of cortisone and it’s miraculous properties to tamp down inflammation, mid-century, the field of rheumatology switched gears and began looking at ways to suppress immunity.

    #466873
    Maz
    Keymaster

    🤞🤞🤞 and toes 🤞🤞🤞

    #466871
    Maz
    Keymaster

    Thanks for sharing, SK. Interesting that bleomycin, a chemotherapeutic medication induces lung inflammation leading to fibrosis.

    Have you seen this research?

    Ciprofloxacin

    #466868
    Maz
    Keymaster

    Interesting article, SK! Just my inquisitive mind, but I’d love to know how the researchers “induced” the fibrosis for their study.

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