Home Forums General Discussion New User – Dosage Question

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  • #307553
    jasregadoo
    Moderator

    I have a question regarding the current dosage vs. historic dosage listed. I see the current dosage is 100mg, 2x a day, every day. This is the prescription my rheumatologist gave me. I tried it for a week, and I felt horrible. Not so much an increase in pain, but rather I felt sick to my stomach and basically like crap all day. I see the historic protocal is 100mg 1 or 2 times a day, 3 days a week. I have decided to cut back to 1x a day, MWF, and see where that gets me. The thing is, since this process takes so long, and my doctor would rather put me on methodrexide (I know that’s wrong, but I don’t remember the correct name for it). I’m not eager to try that treatment.

    I first started having pain in my big toe back in August of 2014. I thought I had injured it. I babied it, and it didn’t get better. I then thought perhaps it was gout, but doctor said it didn’t sound like gout. Pain spread into both feet, then ankles, hands, wrists, knees, and sometimes elbows. I went to my rheumatologist and was tested, and she diagnosed me with seronegative inflammatory arthritis. She put me on prednisone for about 6 weeks, which worked wonders, but as we know, you can’t stay on it. As I tapered off, the pain came back. We tried plaquenel for awhile, but I had a bad reaction to that (allergic). Then we tried sulfasalazine, which doesn’t seem to be helping. I looked around and found this treatment, AP, and asked if we could try that next, and she agreed. There are no doctors who specialize in it very close to me, but my doctor is willing to give it a try, so I’m happy about that. I do like my doctor and I feel listened to.

    Does anyone have advice about dosage, and whether the 100mg 1x MWF is a good starting dose, or should I be going with current protocal, or something in between? This whole thing is overwhelming and scary.

    #368374
    lynnie_sydney
    Participant

    Hi jesregadoo
    The historical (does not mean out-of-date, just what Dr Brown used) protocol is often more suitable to those with inflammatory forms of arthritis and even that dose can be lowered if the jarisch-herheimer response is too much for the patient to be able to function.

    https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

    If you want to lower the dose, it can be good to have a week’s washout before starting on the lower pulsed dose because the half life of the medication means it stays in the body for some days. On that point, with this approach to treatment, more is not necessarily better – quite often less is more in terms of dose. Patience is the key, improvements are frequently in very small increments and a “herx” is to be expected (apparent worsening in the short-term, due to cell die-off). If you can consult an AP Doctor, he/she will know all this, most rheumies won’t.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #368375
    Maz
    Keymaster

    @jasregadoo wrote:

    I have a question regarding the current dosage vs. historic dosage listed. I see the current dosage is 100mg, 2x a day, every day. This is the prescription my rheumatologist gave me. I tried it for a week, and I felt horrible. Not so much an increase in pain, but rather I felt sick to my stomach and basically like crap all day. I see the historic protocal is 100mg 1 or 2 times a day, 3 days a week. I have decided to cut back to 1x a day, MWF, and see where that gets me. The thing is, since this process takes so long, and my doctor would rather put me on methodrexide (I know that’s wrong, but I don’t remember the correct name for it). I’m not eager to try that treatment.

    I first started having pain in my big toe back in August of 2014. I thought I had injured it. I babied it, and it didn’t get better. I then thought perhaps it was gout, but doctor said it didn’t sound like gout. Pain spread into both feet, then ankles, hands, wrists, knees, and sometimes elbows. I went to my rheumatologist and was tested, and she diagnosed me with seronegative inflammatory arthritis. She put me on prednisone for about 6 weeks, which worked wonders, but as we know, you can’t stay on it. As I tapered off, the pain came back. We tried plaquenel for awhile, but I had a bad reaction to that (allergic). Then we tried sulfasalazine, which doesn’t seem to be helping. I looked around and found this treatment, AP, and asked if we could try that next, and she agreed. There are no doctors who specialize in it very close to me, but my doctor is willing to give it a try, so I’m happy about that. I do like my doctor and I feel listened to.

    Does anyone have advice about dosage, and whether the 100mg 1x MWF is a good starting dose, or should I be going with current protocal, or something in between? This whole thing is overwhelming and scary.

    Hi jas,

    You’re not the first to be confused by the “historical” and “current” protocol labels. The “current” label was assigned as a result of the MIRA trials. As we all know, any drug trials need to be consistent for measurable results, so all the patients were given the same standard dose. While we’re all grateful for MIRA, as minocycline was then approved as an American College of Rheumatology DMARD, it has has been “anecdotally” proven, over and over, that Dr. Brown’s low and slow approach seems, on the whole, to work better for anyone with a lot of inflammation. I was in exactly the same boat as you when I began minocycline. I started out on 100mg per day and then increased to 100mg twice daily within 2 weeks and was writhing in herx agony pretty soon after. I then had to dial it back and found that 100mg twice a day on M-W-F worked well. I probably should have done a week’s wash-out and re-started on just 100mg M-W-F and dialed up gradually, but I was a freshman. 😳 We’re all duped into thinking “more is more” with medications, but the treatment is pretty counterintuitive in this sense, as “less is more” in many cases. In the main, the RAers who can tolerate the usual daily dose regimen are either already on immunosuppressant therapy and these block the effects of herxing as the immune system just isn’t alert to the bacterial endotoxins released or they have milder disease with low grade inflammation. While it’s not always the case, the rule of thumb tends to be that degree of herxing is relative to baseline inflammation.

    Yes, it’s all very scary at the outset. Think we’ve all probably experienced this here. The treatment is unnerving, but it can help enormously to be working with an experienced doctor. So, if you ever need that kind of reassurance, then it can be very worth considering traveling to see one. 😉

    #368376
    jasregadoo
    Moderator

    Thank you both for your replies. I’ll stick with my 100mg 1x MWF for now, and see what happens. I appreciate the guidance and help very much. 🙂

    #368377
    m.
    Participant

    On the advice of my doctor, I started out with a low conservative dose, 50 mg MWF.

    When I raised the dose to 100 mg MWF a few months later, I took it as a divided dose, 50 mg in the morning, and 50 mg in the evening, MWF.

    This worked well for me. There is no one-size fits all protocol, and most people find they need to tweak and make adjustments, including a change in antibiotics or adding in IVs.

    Overall, you want to see an improvement in labs, as well as an improvement in symptoms. The changes usually occur gradually, with two steps forward and one back.

    In the beginning, I looked for small windows of improvement. Was there any time during the day, even an hour or two, that I did not notice my pain? Were my feet less stiff and sore upon waking in the morning?

    Labs will sometimes improve before symptoms, and sometimes it’s the other way around with symptoms improving before labs.

    I was very encouraged by not only small windows of improvement, but seeing my lab numbers inch towards the normal and finally in-range.

    Hang in there and keep the faith!

    #368378
    kater
    Participant

    Hi and Welcome
    regarding the stomach upset, Mino can do that. Initially it didn’t bother me but now it will actually make me vomit if I take it on an empty, or too empty stomach. I take it with food now which only lessens efficacy a small amount–just make sure not to consume it with dairy or iron rich foods. The stomach upset could be part of the herx if it is general and lasting, but if it follows taking the drug it is probably sensitive stomach and the food might help. Good luck and hang in! Its slow process but it works for most people.
    cheers
    kate

    Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
    Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

    #368379
    jasregadoo
    Moderator

    I’ve been taking 100 1x MWF and doing well. I thought it might be time to increase my dosage to 2x MWF, because I was reading The Road Back, and saw that Dr. Brown had most people on a 250mg MWF dose. So I took 100mg in the morning, and 100mg last night. I don’t have any extra pain, but my stomach feels gross and has all day, and it doesn’t seem to matter if I eat or not.

    Wondering if I’m likely to see real improvement if I stick on the 1x a day dose, MWF? I was actually feeling pretty good last week, and am definitely feeling better than I did before I started. This week I have a little more pain than I did early last week (which is why I increased my dosage).

    I’ve added some magnesium and boron to my day, too. Magnesium is in the form of CALM.

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