Home Forums General Discussion Week 3 complete

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  • #456578
    NoRAsomeday
    Participant

    I just finished week three on minocyline torrent brand 100 mg at bedtime (1 hour before for esophagus). I oddly feel better in the morning than I do in the evening before taking medication. After work I can barely move. I started taking 2.5 mg of prednisone this week to make it through the days. I work, I have three children, two still in diapers. I guess I need someone to reassure me that it will get easier. I take supplements (tumeric, 3grams vitamin C, ginger, d, noni, b complex, priobiotics, milk colostrum, epsome salt baths, food based multivitamins. Diet is gluten free always, gf grains rarely, organic usually, whole food form usually, never take Otc pain meds, still on hydroxoclorquin. I’ve been doing the wellness pod called cacoon it has infrared and vibration technology. I did yoga all summer occasionally road bikes and walked now I can barely make it through a modified yoga class. I can’t walk by day’s end typically and riding a bike would be painful. I know it gets worse before better but wow is it discouraging. Any advice or words of encouragement appreciated.

    #456589
    bonnielou
    Keymaster

    Hello NoRASomeday. I am so sorry to hear how much you are struggling. These diseases are dreadful. Are you using an AP physician to help guide you? I don’t think I could have managed 100mg daily. Three weeks is very early into the process. Could you cut back to a pulsed dose (maybe MWF), and/or a 50mg pill? Three young children and a job is a lot to manage even without RA. You might need to go more slowly.

    But it does get better.

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #456590
    NoRAsomeday
    Participant

    I was taking 100 Mwf and actually feel better taking 100 daily. I am using a doctor referred by the road back. He bought the book is willing to read it and treated a few people in the past. He said they did really well and was willing to prescribe me the medications. I also take Ldn and have for years. The last two days have been a bit better. Thank you for the kind words and advice.

    #456591
    richie
    Participant

    Hi I see no reason to cut back –in fact quite the opposite -Feeling better in the morning may well show the effects of the evening pill —It may well be worth a try to ALSO take 100 mg in the morning to see how you will feel throughout the day –It sounds like you have no problems with 100 mg think about trying 200 daily for a bit —-Somehow over the years the message got twisted –Pulse dosing or MWF dosing came AFTER a regimen of ivs —THE reason for 200 mg daily -if you tolerate it is that it replaces the need for IVS –Suggest you show your doctor the MIRA studies which showed good success at 200 mg daily for RA –good luck —
    richie

    #456592
    NoRAsomeday
    Participant

    Thanks Richie I’m going to look into that more closely. Now is the time since I have 2.5 grams of prednisone I can use if I herx. If you use the higher does does it still “kill the bugs” or does it mostly offer antinflammatory benefits. I get mixed info on the higher dose.

    #456594
    jasregadoo
    Moderator

    NoRAsomeday, how much D are you taking? There is varied opinion on Vit D, many say you need it if you have RA. Others find that too much causes more pain. Back before I was diagnosed, before I started AP, I was told by 2 doctors (1 conventional, 1 alternative) that I should take Vit D3, high doses, even though my tests showed I was in the normal range. I took a fairly high dose (maybe 5,ooo IU a day, I don’t remember exactly), and my pain went really high really fast. I don’t know for sure that the Vit D3 caused the increase in pain, but after reading that many people taking high doses of D had increased pain, I cut way back. I now get most of my Vit D by walking the dog, since I live in a sunny part of the U.S., and my RA has subsided enough that I can happily take my dog for a 3 to 4 mile walk every day.

    Regarding your dosage of Mionocycline, I was on 100mg MWF for awhile, and I increased gradually to 100mg 2x daily. When I started out I was on 100mg daily and I felt horrible, so I cut way back. Richie’s adivce is good…look into the different doses, and see what works well for you. It may be that increasing your dose is just the ticket. And if you find that you feel much worse, go ahead and cut back for awhile. It’s a long process, but it works for so many of us, and I believe you will get there. 🙂

    #456595
    Maz
    Keymaster

    if you tolerate it is that it replaces the need for IVS –Suggest you show your doctor the MIRA studies which showed good success at 200 mg daily for RA
    richie

    Richie is right that some folks do better on daily dosing right out of the gate. With RA, however, a lot depends on the pre-existing inflammation and this is very often reflective of the degree of herxing a person experiences (more inflammation along with higher dose = greater herxing). The first few months of AP can be pretty tough for RAers, because of this, and many who start with too high a dose can wind up in a massive herx and think they are failing treatment. I know, because I did this! I discovered that it is far safer to gradually and slowly dial up the dose than to suddenly jump to a higher dose.

    —-Somehow over the years the message got twisted –Pulse dosing or MWF dosing came AFTER a regimen of ivs —THE reason for 200 mg daily -if you tolerate it is that it replaces the need for IVS

    Sorry, Richie, but this is where you and I diverge…

    Dr. Brown discusses pulsed dosing in his original book, The Road Back (which is included in its entirety in The New Arthritis Breakthough, by Henry Scammell), and intermittent pulsed dosing was Dr. Brown’s particular approach to treating mycoplasma, which is a slow-growing organism that he remarked didn’t require daily dosing. Daily dosing of minocycline, in fact, doesn’t replace IV clindamycin, which is a different broad spectrum antibiotic that is used as a means to clear other pathogens prior to commencing oral minocycline that may inhibit progress on orals. Dr. Brown used both methods and he talks about titrating the dose to patient tolerance in the book. Some patients do fine without IVs, some do better and it’s the same for daily vs. pulsed dosing of the orals.

    The reason daily dosing later became a “standard” protocol (and one that was adopted by some rheumatologists) was because of MIRA, the clinical trial where Dr. Trentham, etal, studied minocycline as a DMARD for RA back in the early 1990s. This came after Dr. Brown’s passing in the late 1980s. The reason for the standard dosing in the trial was to reduce the variables among the patient cohort in the various study arms. If everyone was receiving the same dose then more accurate result collection could be performed across the patient population. Dr. Brown was a clinician and researcher, but his research was focused on the infectious origin of rheumatic disease and he treated patients on a case-by-case basis. He also used a wide spectrum of different antibiotics, something that isn’t widely known, but has been shared by both his patients and those who knew him. Millie Coker-Vann, for instance, his Research Lab Director said that sometimes Dr. Brown would only use a penicillin for a patient. This is because he ran numerous labs on his patients to try to identify which pathogens might be perpetuating the patient’s rheumatic disease. Interestingly, clindamycin does have some effect on strep, parasitic protozoans, staph and others and this may be just one reason why it helps some patients to get a bit of a boost at the outset. Dr. Trentham who ran MIRA, on the other hand, was a conventional rheumatologist who was not an adherent of infectious theory for rheumatic diseases.

    The big elephants that remain in the middle of the room…if minocycline is only a DMARD and more is better, then why do some patients herx so badly on higher, daily dosing and yet recover better on lower, pulsed doses? Also, why do other classes of antibiotics that do not have the same DMARD properties as minocycline also work for many?

    According to the Oxford Journals, minocycline reaches peak serum concentrations in the blood at 2-3 hours after the dose and it’s half life (meaning when half of it is metabolized out of the body) is 12-18 hours. So, this would tie in with your dosing and how you are feeling, NoRASomeday. I tend to lean on the side of Bonnie in terms of dosing. More isn’t always best for RA and three weeks of treatment would coincide with the heaviest herxing period, which can last for several months. It’s a long-term therapy, with no overnight miracles, for sure, and Brown did say,

    In the most entrenched and recalcitrant cases, it can take up to thirty months from the beginning of therapy until the patient clearly turns the corner toward improvement, and the achievement of lasting remission can take several years….In shorter-term cases – and short term doesn’t necessarily mean less severe – complete remission can be achieved in less than six months. —The New Arthritis Breakthrough, by Henry Scammell, pages 269-270

    See FAQ #26: https://www.roadback.org/faqs/?faq-category=35

    It does seem all so confusing in the beginning! Keep the faith…as strange as this sounds, the paradoxical worsening at the outset of treatment with AP is said to be a good sign that the treatment is reaching its target. You’re doing a lot of great things to help your body detox and I wish I had learned these things when I started treatment 10 years ago. Tumeric helps to promote glutathione in the body, but anything else you can do to increase glutathione can help, such as NAC, non-denatured whey protein, or IV glutathione pushes (if you have a doc who does these). Antioxidative strategies that help to rid the body of toxins also help a good deal.

    #456597
    PhilC
    Participant

    If you use the higher does does it still “kill the bugs” or does it mostly offer antinflammatory benefits.

    It does both, but I want to caution you about being too aggressive/ambitious at such an early point in your treatment. Since you’ve only been on mino for three weeks, there is still a strong possibility that you could start experiencing strong die-off reactions within the next several weeks. If that happens, increasing your dose prematurely would likely make the situation worse.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #456599
    NoRAsomeday
    Participant

    Thank you all so much. I had low/normal inflammation last time I was tested in June. I had normal vitamin d even though I take 5,000 ius a day thyroid normal too. I did have a off symptom tho little bumps on my ear. D on my fingers/feet. They prescribed my ear (only really noticeable ones seems lack improperly formed cartilage) doxycycline it’s less now but still there. Bumps on my fingers and feet came and went. I still have the doxy.

    #456602
    Airen
    Participant

    Hi NoRA. I want to tell you I am a young mom too diagnosed with RA at 35 with two young children watching mommy all of a sudden not be able to function. It is heartbreaking BUT PLEASE KNOW you will come out of this!!! AP worked for me! I am 14 months in and I am almost in remission!!! My numbers have dropped continuously over the last 9 months from 89 in January, 39 in April and 25 in July. I tell you what though, those first 6 months were PURE HELL. I definitely herxed right at 3 weeks and continued to do so for several months after starting. I began on the historic protocol of 100 mg once per day MWF. After 4 months I increased to 100 mg daily, then 4 months later 100 mgs twice daily and am doing wonderfully! I am still on 3 mg pred and slowly weaning off that. But I am mostly back to my old self!! Hindsight now I realize that sadness and depression are part of the herxing and healing. I was really low…and I am naturally a very happy/glass half full kind of girl. So if you get down, just push through it and do not give up on the treatment plan…the PLAN OF NO RA SOMEDAY!!! 🙂

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #456603
    NoRAsomeday
    Participant

    Thank you so much for sharing your story! It’s so good to know it works and that I’m not alone in the motherhood department. Good days ahead!! Thank you!!

    #456626
    NoRAsomeday
    Participant

    Week four complete now and this weekend I was able to move more and I even skipped my prednisone two of the three days. I am hoping this is a sign of things to come!

    #466988
    NoRAsomeday
    Participant

    Hello,

    It has now been multiple years without symptoms! Until I got covid last august. I was sick for months with extremely high liver enzymes. That lead to more test and a diagnosis of prescription induced lupus.
    I have been off mino for 8 weeks and bloodwork returned to almost normal within that time. I restarted LDN, 2.5 prednisone.
    I want to start a pulsed dose of doxy or erythromycin. I am unsure which one to start and what type is least likely to cause liver injuries and how much of either is considered a pulsed dose.

    Obviously wanting lower as only small minor symptoms are prevalent. No rf factor!!! First time since 2012 it is normal but went down every year on mino.

    I have positive ana still and test or more detailed now it looks like cell shape ana indicate scleroderma not ra. Symptoms were ra back when I had them, but dont have any currently other than minor stiffness at bed time occasionally.

    Has anyone had prescription induced lupus and tried another script with success?

    What are the dosage recommended for other drugs at a pulses does.

    What brands and forms of these scripts work best n have less risk of liver side effects?

    #466991
    Soujanya
    Participant

    Hi NoRAsomeday,
    I am 45 yr old with 2 young kids. Diagnosed with RA in 2015.
    Have been searching for help without impacting my body on whole.
    In 2021, I started working Functional nutritionist and made many lifestyle changes. They helped me to 80% and I now can move easily most of the time.
    My stress levels increase when have guests at home or I travel, bringing my pains back. But those pains dont stay for long and can go away with few hours of rest.
    Of all the changes, removing triggering foods and adding potassium, collagen to my routine got me much improvement.

    If you have tried the AP protocol, can you direct me which doctor can do it in Dallas, Texas ? I reached all the Dallas offices mentioned in doctor’s list from Roadback, but no body was providing the AP in IV.

    Hope you get better.

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