Home Forums General Discussion Minocin dose

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  • #302166
    Spiffy
    Moderator

    I may be starting Minocin in about 2 weeks to get my ra factor down. I have read that the standard dose for ra is 100 mgs. BID on M W F. And I have also seen it as once a day M W F. Can someone clarify this for me? I want to go in with all my ducks in a row. When beginning do you jump right in to this regiment or work your way in to it. I am on no medications besides supplements at this time. This would give me about a month on the Minocin before seeing my rheumy. She will not be happy about it, but it is my body. My factor fell about 17 points in 7 weeks on doxy. My last check it was at 53. I will cross my fingers that it will not affect my ANA.

    I have heard that Minocin does not make you as sensitive to the sun as doxy. Is this true? My girls sort of expect me to be out in the sunshine with them at least some this summer!

    Rheumy will ant to start Plaquenil. Thoughts?

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #329234
    PhilC
    Participant

    Hi,

    There is no “one size fits all” approach — it must be tailored to each individual patient and depends upon things like disease severity, how long the patient has been sick, and the patient’s response to treatment.

    From the “Historical Protocol”:


    For patients with less severe or early disease, the IV or IM treatment may not be required as they experience the same result using oral medication exclusively. The optimum standard dosage for these patients is minocycline or doxycycline 100 mg. once daily, Monday, Wednesday and Friday or tetracycline 250 mg. twice daily Monday, Wednesday and Friday.

    See: Less Severe, Early Disease

    So, a typical starting dose for someone with RA is 100 mg every other day or three times a week. Most people just take it on Monday, Wednesday, and Friday (100 mg MWF). However, even that can be too high of a dose for some people, so a more cautious approach would be to start at 50 mg MWF. Some people may need to lower the dose even further, to 25 mg MWF. An even lower dose could be used, if necessary (see below).

    From the “Historical Protocol”:


    If the medication tends to aggravate the condition, it is spaced differently, maybe to once a week or twice a week, and gradually increased to the M-W-F dosage. Some patients are so highly sensitized to drugs that they can only tolerate minocycline or doxycycline 25-50 mg. once every two weeks or even once a month, but with continued titration of the dosage, it is possible to work up to the optimum standard dosage of minocycline or doxycycline 100 mg. once or twice daily, Monday, Wednesday and Friday without flaring the disease.

    See: Severe or Long-standing Disease

    See also:
    Minocycline prescription tip
    How I slowly increased my dose of minocycline

    Phil

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

    #329235
    jasregadoo
    Moderator

    plaquenil made me far more sensitive to the sun than minocycline has, but I think I had an allergic reaction to the plaquenil. I blistered after 20 minutes in the sun on a hot day, and parts of my body (shins) that were not exposed to the sun developed a rash. I’m on a MWF 100mg dose of mino, and haven’t had any problem with the sun since quitting the plaquenil.

    My doctor thinks I am taking 100mg bid of mino, 7 days a week, as that is the current protocol. I haven’t decided whether to tell her about my dosing or not, in my next appt in May. I first started taking 100mg bid 7 days and felt very sick. Not pain so much as just sick to my stomach and TIRED. So I backed off to the historic protocol. Last week I tried 1 day of two doses of mino, and again felt really crummy. For now I’m sticking to 100mg 1x a day, MWF.

    Take all of that for what it’s worth, as it is only my experience. My suggestioni is to start slow and low, and if you want to increase, go slowly there as well. Assuming you have no problem with the plaquenil, there’s no reason you can’t do both at the same time. I’m taking sulfasalazine along with my mino, and a small dose of prednisone.

    #329236
    Spiffy
    Moderator

    Thank you so much for the replies. I was on 100 mgs. Twice a day with doxy from the get go…they were treating me for possible lyme. I tolerated it very well. So hopefully, I will start with a MWF 100 mgs. 1 time per day with the Minocin. I am afraid I had an allergic reaction to sulfa many years ago. So I guess sulfa drugs would be out. Plaquenil would be first choice! Would not do well with mex because of MTHFR mutations. So it would be straight to biologics if I progress. I have such high hopes for AP! Bless you!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #329237
    emmaline
    Participant

    I’m starting MINO in a few weeks also. I got it today, but I’m afraid I’ll start herxing right away & I have to get a project done. I want to start it now because I’ve had to increase my Pred. to 10mg to manage the inflammation and I want to wean down ASAP.
    Does anyone know, if I started the MINO and it was too much and I back it down, will I be able to function? Maybe I’d be fine to finish my project…
    I accidentally told my Dr. that the starting dose is 100mg, 2X/day MWF, so I’m really glad I got on here and read this to know it is 100mg once a day MWF. I probably would have been in a world of hurt. He tried me on Doxy & Clarithromycin last summer for possible Lyme, too. But it was killing my mitochondria so I had to quit. He has me taking L-Carnitine and B Complex so that doesn’t happen again hopefully.

    #329238
    Spiffy
    Moderator

    How did you know it was killing your mitochondria?

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #329239
    lynnie_sydney
    Participant

    I’m starting MINO in a few weeks also. I got it today, but I’m afraid I’ll start herxing right away & I have to get a project done. I want to start it now because I’ve had to increase my Pred. to 10mg to manage the inflammation and I want to wean down ASAP.

    Emmaline – I think you are wise to get the project done first. That, in itself will likely be a stressor for you and probably not the ideal time to start on mino. When you do start, you would also be wise not to cut the pred too fast or you will likely get a rebound effect from that also. And there is nothing to stop you taking an even smaller dose to start with – say 50mg – and gradually increasing as you feel able to tolerate. Low and slow seems to work for those with inflammatory forms of rheumatic disease. And responses are quite individualised. I was fine on 100mg MWF from the start but my diagnosis was Palindromic RA and my 6 week herx (back in 2003!) was quite tolerable.

    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)

    #329240
    emmaline
    Participant

    “killing my mitochondria”: I thought this because I was so tired and fatigued and very heavy. I felt like I weighed 1,000 pounds and I was having chest pain. Are you thinking perhaps this was herxing? My Functional Medicine doctor had me do a mitochondrial lab test and the results showed Mitochondrial Disease or Disorder. When I went to him to ask for MINO, I feared he would say no because of this reaction last summer, but he said, “it doesn’t mean it wasn’t working, but it was debilitating your ATP function and that is dangerous.” He is having me take L-Carnitine and B-Vitamins as well as other supplements to support my mitochondria this time.
    Perhaps I will try starting with only 50mg. I’m really frightened to take the road back to be honest, but I whole-heartedly believe this is the answer to my RA. I never had a positive Rh and my sed rate was only 10 a few months ago. The prednisone will be the hardest to withdrawal from. I understand I don’t want to suppress my immune system because it needs to kill the mycoplasma, but I also understand that I need to back off slowly. I have so much inflammation. I was afraid to fall asleep last night because everything hurt and I was scared I would wake up and not be able to move. What a terrifying feeling!

    How will I know if I should just deal with the discomfort to get better and when to back off?

    Thank you so much,
    emmaline

    #329241
    PhilC
    Participant

    Hi Emmaline,
    @emmaline wrote:

    “killing my mitochondria”: I thought this because I was so tired and fatigued and very heavy. I felt like I weighed 1,000 pounds and I was having chest pain.

    I had similar thoughts when I first started taking doxycycline, so I quit taking it after three weeks. Had I known what I know now, or had I been under the care of a more knowledgeable doctor, I would have simply reduced my dose.

    It is not unusual to experience fatigue as a result of antibiotic therapy when it is used to treat chronic diseases. It may be that your treatment was simply too aggressive, too soon.

    Phil

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

    #329242
    emmaline
    Participant

    That makes sense to me. Could’ve saved me a year, too, but I’m here now and grateful for the help. Thanks Phil.

    #329243
    lynnie_sydney
    Participant

    Emmaline
    The best advice I can give you is to read, read, read and keep reading. The Scammell book, others on an antibiotic approach to rheumatic diseases, the information on this site and the testimonials. It will empower you to case manage your own road to greater wellbeing and help fill the space where the fear now is with hope.

    I did that many years ago. And 28 years after my symptoms first presented, I have no joint damage and have only spent 2 of those years on a more traditional medication (sulfasalazine). I was on Minomycin (Australian brand) for 7 years with excellent results. And, though I eventually developed hypersensitivity to the tetracyclines, I have been on various antibiotic regimes since then, have changed my diet to a very ‘clean’ one that omits gluten, dairy and almost all preservatives and I generally do very well. I can’t remember the last time I was in the sort of pain that could be called substantial. As I am now 63, I expect the odd ache 😀 😀 😀

    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)

    #329244
    Spiffy
    Moderator

    I love to hear such positive stories! Thank you so much for sharing! My grandest hope is that by some small miracle that my ra factor will continue the downward trend. I will always wonder where it came from. My sed rate and c reactive are normal. I am hla b27 negative, my anti ccp is negative. I am hopeful my ANA is back to negative, but last check if was 1:40. No one in my family has ra. However, I am MTHFR compound heterozygous which could lead to many things. My mom accidentally dropped a knife which landed in my foot in early August. I wonder how this freaked out my immune system. Doctors do not see a connection, but it was painful and stressful. My flare started mid October with my stiff neck. I also had a stressful time during this time when my grandmother died. Then the arm weakness came about 3 weeks later when my neck quit hurting. Then I had shoulder and hip joint pain. Hips only hurt for the night, but are not as strong to this day. My pains rotated from shoulders to upper arms to elbows through forearms…no wrist or hand involvement. Lots of muscle pain/weakness. I could not even squeeze my shampoo bottle. My left ankle will still feel weak, and I have to walk a little funny sometimes. I had some puffiness in my elbows and forearms for several days in December with no pain. I do not know if this were truly ra joint swelling or something else. Now, after 6 weeks of pt, I feel a little stronger in my day to day activities. However, my upper back and arms still shake when I do my pt exercises or when I do things like trying to pick up my dog. I do not know what hit me but if has definitely left its mark. As far as pain, I still have no morning stiffness, except for my lower back on occasion, which has done that for years. It goes away quickly though. My index finger on my right hand will sometimes feel like it has been pulled or something. It is also somewhat bigger than the one on the left…the whole finger not just the joint. My knees will have transient what I call gassy type feelings. Through it all, my elbows have been the most consistent trouble area. No stiffness, and I hope no more swelling or redness, but they have aches and little pains that come and go. Sometimes they do not bother me, but I am always so mindful of them. I do not know why, but my right elbow on the inside tip does not like to be up against something like the pt table or my mattress or even against my body sometimes. It feels like it has been hit, which it hasn’t. But it is just more tender than the other side. and my fatigue has been one of my main complaints. Nothing about my blood work gives me a reason to be fatigued except for the ra factor which has gone from 71 to 53, but I have no idea what it is right now. The worry and stress has been a big part of this. I am so tired of living with such few answers. But I am grateful just to be here today to see the beautiful sunshine. Happy Easter!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #329245
    Trudi
    Participant

    @Spiffy wrote:

    fatigue has been one of my main complaints. Happy Easter!

    Hi Spiffy–

    Unusual fatigue is a major symptom of Lyme. Kind of forgot how much I slept in the early days.

    Happy Easter to you, too.

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #329246
    Trudi
    Participant

    @Spiffy wrote:

    fatigue has been one of my main complaints. Happy Easter!

    Hi Spiffy–

    Unusual fatigue is a major symptom of Lyme. Kind of forgot how much I slept in the early days.

    Happy Easter to you, too.

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #329247
    Spiffy
    Moderator

    Yes, T, Lyme is always the big question to be answered. I am going to do an Iginex test Tuesday. And then wait wait wait for ten days!

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

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