Home Forums General Discussion Newbie, dosage ? Increase or not??

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  • #299859
    Anonymous
    Participant

    I have been reading this board for a few weeks and have really enjoyed it!

    I have a question–I just started AP and have been on mino 100mg MWF for 1 week. I am hurting and joints are sore all over! I am newly diagnosed with RA ( 5 months), so am not sure if this is a flare or herx.

    My regular rheumatologist prescribed mino 200mg every day. But after reading The Road Back, I decided to start slower, hence the 100mg MWF. Now I am wondering if I should up the mino to 200mg MWF, to be closer to following the doctors orders. Or should I take it every day like he prescribed? Would it help me get over this sore period faster? I take it today and am trying to decide how much to take!

    Also, I am concerned with the slow recovery on AP, joint damage may be occurring. My doctor tells me early aggressive treatment is the way to prevent joint damage. How do you all feel about this as the AP is a slow process?

    Thanks for any advice!

    #309473
    Maz
    Keymaster

    Hi Peach,

    In my own case (and I emphasize “in my own case”, because I tend to be a stubborn ol' bat), I chose abx therapy over conventional meds, because I just felt that the dangers of the standard drugs far exceeded any joint damage. I figured if I needed a few joint replacements down the road, then so be it, but that it would be a bit harder to replace a liver, heart or kidneys. At the time, it felt a bit like “choosing my poison”, I will admit, and I think denial that I could have been struck by severe RA so fast, as well as the fear, probably played into my decision. It also helped that I had a very supportive husband and older children who didn't need my constant attention, so I could wade through the painful early months without too many pulls on my guilt strings.

    However, having said this, in retospect, although the early months were very hard, I am very pleased I did make the decision! Although I still have a ways to go, after 16 months, I'm currently at about the 80 to 85% improved mark with a fewer and fewer “backward step” days.

    Making this choice is a pretty personal one for each one of us, because our circumstances are all so different. Some people need to be able to function for children, work or if they live alone. The early months can be very challenging on AP, because some people worsen significantly before they start making the “glacial” improvements.

    Choosing what dose to take is another personal matter. It may depend on one's disease (scleroderma patients often need and do better with daily dosing), but it also depends on whether one believes in infecious causes and the rationality for pulsing or the anti-inflammatory benefits of daily dosing. It is the rising and falling serum levels of pulse dosing that is said to kill more bugs. There is probably still some bug-killing that goes on with daily dosing, but it may be a much slower process to recovery for RA…theory being that herxes mean die-off, which is a good thing.

    Pulsed dosing on MWF actually turned out to be less painful for me than daily dosing, though I may be the exception to the rule. I started at 100mg the first week and felt 'good' on this dose, then upped the mino to 200mg daily the second week. After that, it felt like I had battery acid flowing through my veins. I'm sure it was partly herx with the increased dose, but I had lived with that battery acid feeling for a full year on continuous high dosing for Lyme and was just very tired of that feeling. So, upon the suggestion of some wise ones here, I played with my dose a bit and found that I functioned much better on 200mg MWF.

    Since doing this, on the days I take my mino, I get worsening which eases off on my day off. The pattern has become so predictable that it's become much easier to tell the difference between herxing and flaring. Some people feel better on their mino day and worse on their off day…so, again, it's a very personal thing and no 'one size' fits all.

    I think you must be quite the “maverick” (as Doc Brown said) to have started right away on pulse dosing after having done all the research for yourself. This is going to serve you well, wherever your path leads, as you know your own body best and what it's feeling.

    Having re-read this post, I'm sure what I've shared probably isn't much help at all as our experiences are always going to be so unique! But, just want to encourage you more than anything…it's still very, very early days and it is going to take some time to work out how your body responds to the mino and dosage adjustments you may make. It's also possible you could worsen in the first few months, which was the hardest time for me, not knowing if I'd made the right decision or not. We're all here, though, to offer you support in your decisions and progress…and even those backward steps.

    Wishing you well!

    Peace, Maz

    #309474
    John McDonald
    Participant

    Maz – great post.

    Peach – At first it is pretty tough to distinguish herx from flare and maybe they aren't much different at first. When you begin your body is pretty diseased so you may have a herx or a flare on any given Tuesday. However herxing is pretty much dose dependant. Later or sometimes even in the beginning you can tell a herx by its correlation in time to your dose. Minocycline has a serum half life of about 15 hours or so, it varies. It takes about 3 or 4 half-lives for it to ebb away to nothing.  This is about 2 or 3 days. If you dose on alternate days or even every 3rd day then the herx is usually more intense on just one of the days, depending on what tissue and perhaps what specie of microbes are being killed. For most AP patients who notice a herx, they find it stronger on the 2nd day after dosing but this can evolve and change over time as the Minocycline picks off first the low hanging fruit, and then later the more difficult instances.  Not everyone notices a herx. That is particularly true if you dose every day since noticing the herx response depends on correlating it in time to the dose, but you may not notice a herx on alternate day dosing either. I didn't notice regular herxing until I started a different antibiotic protocol.  I am now sure that I was herxing on AP but it wasn't the regular cyclical herxing that some people report and that I have, uh, enjoyed, more recently.

    Of course we are all patients as you are. No one here is licensed by the government to care for you. Legally you have to work out your dosing with your prescribing physician. My physician has been pretty good about letting me make my own dosing choices but you have to work that out with doc.

    #309475
    BarbK
    Participant

    Hi Peach,

    My two cents to the great input from Maz and John:

    CONTINUE to trust your own instincts!  You are doing it already!

    And if you haven't already, read “the book” – it will give you even more confidence!

    #309476
    Dena
    Participant

    Hang in there.  It took 6 months on 100mg/day for 5 days/week for the lab results to start improving.  It took almost 12 months for me to feel much improved.  I've been on it for 9 years with pretty good resuls.  Now I'm having huge flares and the lab results are sky high, so my doctor as I are trying to figure out what to do next. 

    Dena:)

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