Is it time to switch up my protocol?

[CurlyinNC]

Hi, everyone. It’s been a long while since I posted here. I’ve been taking minocycline for RA since Dec. 2014. I have done very well with just occasional joint stiffness/pain and was able to discontinue my anti-inflammatory with only occasional use. About 2.5 months ago, I experienced a flare involving my left knee and right wrist/hand. My knee has mostly resolved, but the tendons in my wrist and hand continue to be inflamed. I tried using anti-inflammatories with some improvement, but symptoms persist and I don’t want to rely on anti-inflammatories indefintely.

My protocol is and has been for several years, Watson minocycline capsules, 100 MG bid, M-F.

Anyone have opinions on the advisability of changing brands/forms of minocycline? Or do i just continue my current course and take a wait/see aporoach? I see my doctor in a week or so, but doubt she’ll have much to offer.

Karen

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Maz]

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? 🤞

[CurlyinNC]

Thanks for replying, Maz! I had noticed that the forum seemed a bit slow. My doc is not very experienced and I don’t think would be willing to go the IV route, but we’ll see. I have thus far avoided using steroids, but the sports medicine doc I saw wants to do a short aggressive course (I think he said 5 days). I wanted to delay it as I was waiting to have some blood drawn and didn’t want to skew my results. I’m leaning toward doing that, but am concerned about rebounding after the course. I don’t know if that’s likely after a short course or not.

It’s not easy to change up your routine because there’s a chance I’ll get worse. Right now I’m managing pretty well, but would love input from others. My previous mini-flares responded well to a few days of diclofenac, but this is a little more stubborn.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Linda L]

How often were you taking diclofenac before this flare?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[CurlyinNC]

Not very often. Maybe once or twice a month if that.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Lynne G.SD]

Hi Curly;
I used both the IV and the oral and found the oral worked just as well and saved me time.I used the same dosage with the oral on and off for a couple years depending on how I felt.

[Author]

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