February 16, 2022 at 2:45 pm #466781
Hi. I am 6 months in to AP. I am working with a functional medicine doctor, and she hears me out on AP and then agrees and/or modulates according to her medical knowledge. I really appreciate her as she might be the only doctor within hundreds of miles who would prescribe this protocol. I am seeing her this week and I’m on the fence about what to do next in terms of dosage. I am currently at 50 mg minocycline m-w-f. My only other med other than a light amount of supplements and probiotics is 3.5 mg prednisone daily. (About 3 months on that prednisone dosage). So, overall I feel better – much less joint pain, more energy/ less fatigue, gained weight to a healthy norm after going down to nothing. So, my story – I started minocycline the day after I was diagnosed and immediately felt better. Doc ordered 50 mg m-w-f as I am extremely susceptible to meds and agreed that sounded like a low dose. The only problem was a twinge in my knee – which within three weeks of starting mino – became two hugely swollen knees. It became impossible for me to sit on the floor (which was previously pretty easy) and there was constant knee pain and I could not be up walking for long. I had to get a raised cushion to sit on and a hospital bed and a toilet riser. Under docs guidance, I stopped mino for about 10 days, then over 5 months have slowly increased from 1 dose every 7 days, to every 6, to every 5 days etc – until a month ago I finally got up to 50 mg m-w-f. I still use the risers and still can’t sit on floor but overall feel much better, and have slowly gone back to my strenuous barista job and worked my way up to my normal 20-25 hours per week. I was reticent to start prednisone due to a bad past experience with high doses – but once I worked up from 1 mg to 3.5mg, I started to feel better. My knee swelling is slowly diminishing, there is less pain, I am walking better and almost feel like I’m resuming normalcy. Almost… still some knee swelling and I don’t think I’m ready to back off the prednisone yet. So, of course, I will see what my doctor says, but in my own heart and intuition I’m hemming and hawing… do I slowly increase the minocycline up to 100mg m-w-f, or do I stay the course a while longer on 50mg m-w-f. I know no one can answer this for me, but I would love to hear other peoples experience or knowledge on how to proceed when showing improvement but not 100 percent resolved(I read and search this forum and the Facebook site, as well as the book, but I’m only 6 months in). Any thoughts or insight on this are much appreciated. I definitely work with my doctor and my personal situation, and know this is not a one size fits all protocol. Thank you so muchFebruary 16, 2022 at 3:05 pm #466783
Joan, great job listening to your own intuition and your FM doc on how to go low and slow with this approach to treatment. In many cases, “less is more” with AP and it sounds like you’re responding in textbook fashion. Were you diagnosed on the basis of positive RA labs? If so, these can often improve with progress on AP and are good to monitor over time.
Those who find they want to increase their AP dose have generally found it optimal to only increase in tiny increments to offset the potential for excessive herxing. E.g., only increasing by 50mg increments on one of the AP days, seeing how they fare, and going from there. So it can be very helpful if the prescriber writes for both 50mg snd 100mg doses.
Well done finding a great doc to help you! Do you think your FM doc would like to be added to the RBF AP doc list? If so, can you ask her if she’d fill out the info in the following link for the foundation? Thank you!February 16, 2022 at 3:39 pm #466784
Hi Maz, thank you so much for such a quick reply! Yes, my RA diagnosis was based on labs and the rheumatologists assessment of joint swelling in my hands and symptoms such as morning stiffness. My anti CCP was 171 (with over 60 indicating strong positive) and my rheumatoid factor was 30 with normal range being 1-30. My ESR and CRP were within normal ranges. Somewhere I thought I read they don’t repeat anti CCP because it doesn’t change ? (is this true?). Of course I will ask my doc, but which labs would you think need to be repeated? Also, I will definitely ask my doctor if she wants to be on list and provide link. She only works part time, so not sure what her practice goals are, but I am immensely grateful to her (as well as Dr Brown and the Road Back Foundation and the book that magically came to me from the library).I will be curious to see what my doctor thinks – part of me wants to try moving the Friday dose up to 100 mg to see how it goes and part of me wants to stay at the 50 mg a bit longer…sometimes the path is clear and sometimes it feels more uncertain! I will update after I see my doc, any insights from others appreciated, thanks!February 16, 2022 at 9:07 pm #466786
Yes, my RA diagnosis was based on labs and the rheumatologists assessment of joint swelling in my hands and symptoms such as morning stiffness. My anti CCP was 171 (with over 60 indicating strong positive) and my rheumatoid factor was 30 with normal range being 1-30. My ESR and CRP were within normal ranges. Somewhere I Of course I will ask my doc, but which labs would you think need to be repeated?
Essentially, anything that was positive is interesting to watch. My RF came down a lot on tetracyclines, but it took switching to a penicillin to bring down my anti-CCP. ESR and CRP are also good to check intermittently. Everything may worsen with either herxing or flaring. AP won’t stop the occasional flare but these should become less frequent, shorter in duration and lower intensity over time. A good time to recheck labs is at the 6-8 month mark and that’s usually when most people will go back to the drawing board and tweak their protocol, if needed.
Also, I will definitely ask my doctor if she wants to be on list and provide link
Very kind, Joan – thank you! 😀
I will update after I see my doc, any insights from others appreciated, thanks.
Thanks for sharing and look forward to reading your updates!February 18, 2022 at 3:41 pm #466787
Hi I saw my doctor today and we agree best to continue 50 mg m-w-f – for several reasons… mainly, due to my sensitivity to meds and, secondly, I have only reached the dosing protocol in the past month and I am showing steady improvement. I love my doctor – I trust her and she sees me as an individual and not a one size fits all patient. And she said she would be happy to be on the list, I sent her the link!February 18, 2022 at 4:12 pm #466788
Joan, that sounds like a very sensible approach. It’s still very early days in the grand scheme of things and patient experience here, in general, is that its wise to go “low and slow” for RA and not to provoke flaring unnecessarily.
How wonderful that your FM doc is open to being added to RBF’s AP doc list! Thank you very kindly for asking – it always feels like a big ask when patients are newly-arrived here as there is just so much to take in.
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