How to decrease daily dose?

[dixiegirl]

For 4 months, I have been taking Minocycline 100mg, 2x/day. My RA symptoms are all but gone. My doctor suggested trying to decrease my dose to MWF. How slowly should I taper off?

Also, since I take 100mg 2x/day, am I taking twice as much mino as the rest of yall? I don’t experience many side effects, but I’d fee comfortable taking as little as I can and still keep my RA in remission.

I read on this post https://www.roadback.org/forum/viewtopic.php?f=1&t=6260 that pulsing the dose can cause herxing. If I get worse on a pusled dose, how do I know it is herxing and not just my old symptoms coming back because of lack of abx?

Maybe you can’t answer the second two questions, but don’t worry. I’m mostly wondering how fast I can taper off this stuff. I’d really appreciate your help!

[Maz]

@dixiegirl wrote:

For 4 months, I have been taking Minocycline 100mg, 2x/day. My RA symptoms are all but gone. My doctor suggested trying to decrease my dose to MWF. How slowly should I taper off?

Also, since I take 100mg 2x/day, am I taking twice as much mino as the rest of yall? I don’t experience many side effects, but I’d fee comfortable taking as little as I can and still keep my RA in remission.

I read on this post https://www.roadback.org/forum/viewtopic.php?f=1&t=6260 that pulsing the dose can cause herxing. If I get worse on a pusled dose, how do I know it is herxing and not just my old symptoms coming back because of lack of abx?

Maybe you can’t answer the second two questions, but don’t worry. I’m mostly wondering how fast I can taper off this stuff. I’d really appreciate your help!

Hi Dixiegirl,

As you know, we’re just patients here, so unable to prescribe doses as a physician would do. However, we can share info in general terms that may or may not help and which can be discussed further with the rxing doc. 😉

My first thought upon reading your post is that this is still very early days! Four months in is a bit early to be considering changing anything that is working for you. Usually folks will find a good working dose and then wait to about the 6 to 8 month mark to re-assess. There is good reason for this in your sort of scenario. RA is a relapsing/remitting disease and, as you have been on the Harvard Protocol (100mg BID), which does have higher immune-modulatory effects, you may well be reducing prematurely, thinking you are in remission and then finding out that you need longer to knock this out.

The lower, pulsed dosing schedule that Brown used was for folks who had mycoplasma infections who had a good deal of inflammation. Mycoplasma is a slow-growing/replicating bug and doesn’t require daily dosing, as a result. The link you mentioned above was a response in reference to someone who has Lyme disease, which does require daily dosing.

This is just a fellow-patient suggestion, but I would personally wait until I had been in sustained remission for a good 6 months before changing anything. Then, I would lower the dose very slowly, perhaps by stopping just 100mg on alternate days and then waiting for a month to see if there was any breakthrough flaring/herxing. If things remained stable, I’d probably do the same again, this time lowering to just 100 mg daily. Same process again for following month. Then again…I’d reduce to alternate days with just 100mg until a MWF dose can be reached without relapse.

Please bear in mind that this is just the way I would do it, Dixiegirl, and it may be right for me but not for someone else. We each have to feel our way with this process, because everyone’s response will be unique. Some folks are braver than me and might drop their dose from 100mg BID to 100mg MWF suddenly, but having experienced severe RA, I would not want to go back to that place again. It sounds like you are one of the very, very fortunate ones who have had a quick, early response, and while this is absolutely FANTASTIC, I would also probably err on the side of caution, just because RA can present as a chronic relapsing/remitting illness and it would be a shame to rock the boat too quickly on such a great response.

As you’re about to go out of town, it would be wise to wait until your return before making any decision on dosage changes, as you would not want to risk feeling rough while away.

Hope that helps and perhaps others can chime in with their takes for you, too. It’s still holiday season, though, so you may not hear much until your return. Have a good, safe trip! Hearing your good news has made my day! YAY! 😀

[Anonymous]

Hi dixiegirl,

I’m new here and just starting to read the many threads available on this forum. I find it amazing that within just 4 months you were able to be RA symptom free! My wife is about to start the protocol this January. On what medication were you prior to the Antibiotic Protocol?

Good luck with your treatment!

Mike

[richie]

Just an unscientific observation –things are going good =thank goodness –why rock the boat ? The highly successful MIRA studies were done at 100 mg 2x daily —-why change anything now —if you relapse -its much more difficult the second time around to get things under control —In over 13 years around here I have seen folks rue the decision to cut way back too soon –happens much more than it should —
richie

[Marybeth]

Hi Dixiegirl,
I started ABX February 2012. I would say my symptoms were moderate. I contacted Dr. S for advice in starting ABX and he had me start with 100 mg twice a day. I did this for 5 months. I then lowered my dose to 100 mg a day. I continued this for another 4 months give or take with no ill effects. I then lowered my dose to 100 mg MWF and again everything continued to improve. I take a host of supplements and watch my diet. I read everyday on RBF and link to articles. I take what I think might help me. As many will tell you, what works for some may not work for others. My Rheumatoid factor continues to lower but my Rheumatologist keeps telling me that it is not a good enough measure. Why, I can’t make heads or tails why he says it. Good Luck and stick with RBF as it is a wealth of information.

[Author]

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