Home Forums General Discussion New to AP–Herx or Flare? seeking advice

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    I am newly diagnosed with RA, Oct 07. Moderate to severe, early onset. Have no idea why I got this disease. as I have always been healthy and active. I am seeking advice! Here is my brief story…
    Last summer I noticed swelling in my toes, it progressed to other joints and by Oct I was confirmed to have RA. I have since found out I have nodules in my lungs too. I started on plaquenil and added MTX in Nov and Enbrel in Jan. Also, I have had 4 cortisone shots since Oct. However, I was never really happy with all these drugs. I did have to go off the meds later in Jan because I had to have a hysterectomy, which I am still recovering from. During this recovery time, I did lots of research and found this site. I am convinced this is the therapy for me! And since I was off all medication, except plaquinil, I thought now is the time to start. So, I asked my rheumy for a prescription for mino ( which he reluctantly gave me, not thinking it would be effective.) and started it 2 days ago. 100mg once a day this week, then 200mg every day starting next week.
    My question is–I am in lots of pain already, all joints. Could this be a herx this quickly ( 2 days)or is this a flare from being off all the other meds? I am not sure it really matters which it is, but I would like to think it is a herx and the mino is already doing something. I do take ibuprofen for pain. Should I go up to 200mg every day next week or start slower? Any advice would be greatly appreciated.

    I would like to find an AP doctor in the Atlanta area, if any one knows of one. Since my lungs are involved, I would like to be monitored more closely.
    Thanks for any input,


    This could be either a herx or a flare up – it's very hard to tell.
    BUT, you did increase the dosage quite quicly. I am just recovering myself from a too-fast step from 100mg to 200mg. OUCH! Hips, knees, ribs, back, wow, I found joints in places I never realized I had them!

    In addition, it's really tough going off all the meds to go onto just mino. Typically, they recommend you stay on what you are on already, add mino, and wean yourself off the other stuff.
    What you should do is find an AP doc in your area, hopefully Richie can help with that.
    I would back off to 100mg at the most if you can.

    Did you get any herxing on plaquenil? That is a mercilessly herx inducing drug for some people – it was for me, but I had never even heard the term yet.


    I am still on 100mg of the mino with plans to increase to 200mg next week. Maybe this is too fast and I should increase every other day.
    I had to go off the other meds in order to have surgery. So, I have not taken the MTX in 5 weeks and had only 2 Enbrel shots before surgery, 4 weeks ago. My doc did suggest I continue with the MTX and add the mino. But I really don't want to get back on the MTX!
    Don't know about a herx with the plaquenil, as I didn't know what one was then either! I guess I did have diarrehea ( is that a herx??)
    I really want this to work! My doc said I could try it for 3 months, so hopefully I will notice improvement by then! I am really careful about my diet, so that should help as well.


    Hi Rebecca,

    Like you, my RA was swift onset and aggressive, leaving me shellshocked and very frightened. :crying:  After taking my first day of doxy, I was flat out and herxing…couldn't move from bed. That first month, I was herxing pretty much the whole time to varying degrees. That said, you may also be experiencing a bit of backlash from coming off the other meds. You've also had a bit of a stressful time, going through major surgery and the recovery period. Your body has been through a lot, so it could even be a bit of both…herx and flare.

    Unlike the standard RA drugs that you've already tried, it's a bit of a three step forward, two step back process. In the first three or four months, I worsened and all my inflammation markers hit an all time high. It was a real act of faith to keep going with abx therapy, but after this time, the inflammation markers all started to come down, slowly but surely. According to Doc Brown in “The New Arthritis Breakthrough”, this is very common to have worsening in the early months (why some give up and also why many rheumies believe AP doesn't work).

    The hard part it sticking with it in the early days, because it can be a rocky time, wondering if you're doing the right thing. For me, it was a calculated risk…to either be on toxic drugs for the rest of my life or to try AP and give it a year or so to see if it would work. It's been a little over a year now and, though I'm not back to my old self, I'm about 80 to 85% better….still with some days where I go backwards.

    As for dosing, this is a tricky one, because really it's something that should be discussed and agreed with your doc….but we all know, as AP patients, that unless our doc is AP literate that mino will be prescribed for its palliative effects as an anti-inflammatory – the standard 100mg twice a day dose. Doc Brown, on the other hand, recommended 100mg (sometimes less and sometimes more – 100mg twice a day) to be taken on Mon, Wed and Fri, theory being that the rising and falling serum levels allow for controlled herxing (and bug killing) and this also allows the patient an easier time of it. I experienced this, myself recently, when I decided to go from daily dosing to pulsed dosing. I found the 200mg per day was way too much and lowered my dose to MWF dosing schedule. The difference was like night and day. Although I know I am still herxing, as a pattern has arisen on my on/off days, at least now the herxing is more bearable and not constant.

    Everyone is different, though, and finding an AP doc will be your very best bet, as this kind of doc will be able to adjust your dose according to your unique needs. That said, some people do very well on daily dosing, too, so this is really a trial and error thing.

    You've come to the right place, Rebecca!  You'll find a lot of support here on the BB as you navigate your way on AP therapy and do hope you find an AP doc soon. In the meantime, if you don't already have “The New Arthritis Breakthrough”, then you'll find it will answer all your questions. I've read my copy several times now and learn something new each time.

    Wishing you all the very best on your road back!

    Peace, Maz  



    Great post Maz! What a wonderfully comprehensive and accessible intro for a newbie. 

    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)


    Thank you so much for taking the time to write such a thorough response! I may print this out and save it for future reference. I am thinking I will go to the 3 x week dosage, for now at 100 mgs each day. And increase it slowly to 200mgs MWF.
    Thanks again. I have really enjoyed reading all the posts/advice and have learned a tremendous amount. More than I ever wanted to about this disease!


    For an AP doctor in your area I was told to contact one of the 2 addresses:






    Thank you. I did receive a list, so now am ready to contact them! I actually was surprised there are only 2 on the list in Atlanta. I thought there would be more.

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