Home Forums General Discussion En coup de sabre-minocycline

This topic contains 6 replies, has 6 voices, and was last updated by  kater 4 months, 2 weeks ago.

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  • #460131
    alsn13
    Participant

    It has been 2 months since I have started AP therapy. I have both lyme ans mycoplasma. My en coup de sabre has been on my face and scalp for almost 19 years.
    Anyways, I have taken azithromycin 250mg for 2 months but symptoms on my face have progressed a bit from my point of view so doctor added minocycline 100mg twice a day.
    So yesterday was the first day I took both azithromycin (after breakfast) and minocycline(in the morning 1 hr before breakfast and 1 hour before dinner). I had a light headache and dizziness and nausea yesterday. A little bit of fever too.
    Today I don’t feel great either. I cannot stand or sit because I am too dizzy and nauseous. I even cancelled my work in the morning. It is normal reaction? It has been only 1 and a half day since I took minocycline. I will have a follow up consultation with my doc after a month but I don’t think I can take this medication and feel like this everyday…I can’t do things.. just laying on my bed..
    What do you guys think? What should I do?

    #460132
    Kat0605
    Participant

    I’ve been on Azithromycin for 3 months and just started minocycline last week and I haven’t noticed any dizziness. I had some nausea with Azithromycin, but that seems to have gotten better.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #460138
    jasregadoo
    Moderator

    Many people do have issues with Minocycline, esp if you start at the 2x daily dosage. What I did when this happened to me was to cut back to 100mg 1x a day, Monday Wednesday Friday only. That was much easier to tolerate. Once I had been on that dosage for awhile, I slowly increased my dosage to where I could handle the 100mg BID. That would be my suggestion. I know with your diagnosis you will want to get on the higher dosage sooner rather than later, but I would still start out a bit more slowly.

    #460149
    whaleharbor
    Moderator

    To put things into perspective, the first year I was on AP I was on 20mg (yes, that is just twenty) of doxycycline daily….for a year…then I was able to see “a real ap doctor” who gave me an rx for minocycline …but the most I’ve ever been able to consistently tolerate is 100mg every other day and that dose has gotten me into remission now twice. We are all different however and you should check with your doctor.

    200mg Celebrex 1 times per day.
    100 mg Minocycline every other day (Actavis Brand)

    #460151
    Maz
    Keymaster

    Asln, just to add to the great replies already above, the vestibular (dizziness and nausea) symptoms that some people experience with mino is why Dr. Trentham started SD patients with just 100mg (50mg twice daily) a day for the first month of his small trial. Pulsed dosing is another way to do it, if 100mg daily is still too much, but then gradually increasing to twice daily, as can be tolerated. As long as severe headaches aren’t experienced, the dizziness and nausea usually pass within a month or two, as the body adjusts, and helps if the dose is titrated to tolerance. Minocycline crosses the blood-brain barrier so has amazing tissue penetration that is superior to either doxy or tetracycline, which is why it’s preferred for SD.

    Minocycline in Early Diffuse Scleroderma

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #460157
    alsn13
    Participant

    Thank you everyone!
    My doc said to not take minocycline for 3 days and retry again.. in the meanwhile, I am taking azithromycin 250mg everyday..
    I will let you know how I tolerate minocycline after 3 days..
    Go slow makes sense..

    #460303
    kater
    Participant

    I agree with the above about going slow and building but I absolutely cannot take my mino on an empty stomach–will make me vomit in very short order. Take it with food that does not have dairy or iron in it. I am sure this will help the nausea and hopefully the dizziness will pass as you adjust and build the dose. It is a great med for scleroderma so I hope you can adjust. Good luck

    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

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