November 2, 2022 at 3:21 pm #467069hhcarsonParticipant
I am new to AP and was able to find a doctor on the list who is open to this treatment within a couple of hours drive. I have had RA for 17 years and have been on several different drugs over the years. Most recently for the last few years I was on Orencia. I came to know about Dr Brown and the approach made sense. It always worried me to be on a drug that supresses my immune system without getting to the root cause. I was so excited about my first appointment that I forgot which questions to ask that I now would like to know the answers to.
I was concerned about turning blue (call me vain) so she prescribed me Tetracycline 500mg twice a day which I later realized was higher than Dr Brown’s dosage. Also, she recommended it daily which concerns me. She also prescribed 3 mg naltrexone. I took that for a couple of days and decided I needed to start at a lower dose and work my way up so I started at 1.5 and I’m now at 2. She prescribed thyroid medication and hydroxychloriquine. I have not taken the hydroxychloroquine because I was concerned about taking so many drugs at once and taxing my liver. Does anyone have experience with these dosages and medications?November 4, 2022 at 10:05 am #467082MazKeymaster
Yes, I have personal experience of these meds. Sounds like you’ve got yourself a very holistic doc there who is helping you with more than just AP! I currently see an integrative rheumy and have always preferred this multi-pronged approach.
I am just a fellow RAer, although from personal experience I can share that I started out on a 750mg twice daily tetra dose (for Lyme which was very hard going). Some AP docs use this method to clear out any acute infections and then dial the dose back if/when herxing arises. It’s why IV clindamycin is sometimes employed when someone is starting out as well (or for flares and at varying individualized intervals). Was any infection testing run for you?
Are you still on Orencia? If so, this might explain your doc’s decision as immune-suppression can block herxing effects. If so, it’s not necessarily a bad thing as Dr. Trentham (Boston rheumatologist that ran MIRA trials) says in his article:
Article by David E. Trentham, M.D., “Antibiotic Therapy for Rheumatic Disease. You know where we have been; so where are we now?”
Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline can be combined with any other available agent. There are no exceptions! Examples include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both agents may help to avoid gastrointestinal side effects. This regimen usually reflects a desire to obtain additional improvement or to gradually convert to the safer drug, minocycline. Examples include 1. Not having to increase the dose of methotrexate and 2. By increasing the dose of minocycline additional improvement and /or stability may be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable and more expensive drug. Obviously judging the net effect of either drug is difficult or impossible. The same impasse may arise if a clinical or laboratory side effect occurs.
Titration of the AP dose to individual patient tolerance can be a bit of a winding road of trial and error. If your doc’s approach is concerning you, though, perhaps you can send her an email to ask questions?
Getting thyroid levels in shape can make a huge difference to RA pain levels, because both a hypo or hyper state can bring different types of pain that can be confused with RA pain. Again, this can be very individual, depending on all kinds of variables like inflammation levels that influence how well storage (T4) the hormone converts to active free thyroid hormone (T3), and how well thyroid meds are absorbed and various vitamin and mineral levels.
Regarding the potential for mino-induced hyperpigmentation, not everyone gets it. From studies I’ve read it seems to be related to iron metabolism and ascorbic acid (vitamin C) can help avert it. Many RAers (and with hypothyroidism) have low iron and, on low pulsed AP doses, doesn’t seem to be a big issue. I take various antioxidants to help prevent hyperpigmentation and yet found I got brown patches from sun exposure on my forearms with tetra but not the blue patches or spots with low pulsed doses of mino. Sunscreen helps.
Have you had a moment to browse the LDN website? The doses used for autoimmunity are very small.
I have found plaquenil to be a fantastic adjunct with some nice anti-inflammatory properties. I take it with food to avoid any GI effects. It’s one of the rheumatic meds with a pretty good safety profile, though it might interact with other meds that use a particular detox pathway in the liver (P450 cytochrome). I’ve always taken supps to support liver function, like milk thistle and NAC (n-acetylcysteine). I’d always run any supps by my doc though. Just as a precaution, I get an ophthalmic eye check annually. I gather that the original doses that were used were very high and caused eye issues but since lower dosing has been used, this is a pretty rare occurrence these days.
Hope something above might help?
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