PROTOCOL QUESTION

[caroline123]

Although I’m still new to AP, I started taking minocycline in January 2011. Rheumatologist (at my behest) gave me an RX for 100mg taken twice a day every day! She said she was familiar with it but I’ve since found out not the protocol. I have absorbed H. Scammell’s book and think I might be taking too much. I’m tapering prednisone (at 4mg/day now), still taking 200 mg hydroxychoroquine (dropping to one per day today) and want to go to MWF with minocycline until I get an appointment with an AP Doctor. (Closest ones are two states away!) Anyone else experience similar problems getting AP right?

Thanks for any input.

[Maz]

@caroline123 wrote:

Although I’m still new to AP, I started taking minocycline in January 2011. Rheumatologist (at my behest) gave me an RX for 100mg taken twice a day every day! She said she was familiar with it but I’ve since found out not the protocol. I have absorbed H. Scammell’s book and think I might be taking too much. I’m tapering prednisone (at 4mg/day now), still taking 200 mg hydroxychoroquine (dropping to one per day today) and want to go to MWF with minocycline until I get an appointment with an AP Doctor. (Closest ones are two states away!) Anyone else experience similar problems getting AP right?

Thanks for any input.

Hi Caroline,

How have you been faring on the Harvard Protocol (100mg mino twice daily) since Jan? I’m asking, because if you’re doing okay on this dose, then while you’re weaning the pred and plaquenil, you might want to hold off changing anything with your prescribed AP just yet – at least not until you see your new AP doc to get his/her advice. Too many changes all at once can send a person into a tailspin. Usually, most folk around here will just taper one thing at a time. There is no rush to wean from other drugs (unless they have proven harmful with serious side-effects) and can be counterproductive to make to many med changes all at once.

We can’t offer any medical advice on dosing or meds, but I can share what I would do in the same situation, hypothetically speaking. I’d probably get off the prednisone first….very slowly. Prednisone has far more detrimental side-effects, long term, than plaquenil or mino in daily doses. In fact, plaquenil isn’t such a bad drug for most people and actually has anti-microbial and anti-inflam/immune-modulating props…it’s used by Lyme docs all the time (I’m on it) and they won’t use anything immune-suppressive. 😉 Once I’d got entirely off prednisone, I’d probably wait a month or two before slowly weaning plaquenil. Dropping half the dose of this right out of the gate could be too much, so I’d probably try weaning more slowly than this, first, dropping one tab on alternate days to see how that went for a few weeks. Once off both pred and plaq for a few months and holding steady, I’d probably then try to lower my mino dose, again very slowly.

Perhaps others can chime in on how they’ve successfully weaned from these drugs for you, Caroline…in general, though, the mantra around here for pretty much everything is, “low and slow,” just making any changes very slowly, starting nice and easy, so as not to tip the boat.

Hope that helps a bit?

[caroline123]

Yes it truly helps. Guess sometimes I want to get to the finish line before I’m even out of the gate! Thank you for reminding me that patience is important.

Yes I’m feeling good and except for the two incidences in March/April this year have been holding very well. I only feel twinges here and there in my arms, legs & feet with my hands still being biggest issue. But blessedly pain is minimal and many times not at all. My progress from last year when I could barely stand up has been magical, especially since starting AP. I’ve started a journal tracing back to when I believe was the beginning through the “explosion” and up to now. Gratefully I believe this forum has helped more than anything or anyone in pointing me in the right direction. When I think it makes sense I will post it on the Progress section.

Thanks for being here – I will hope to pass on to others.

Caroline

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