Home Forums General Discussion Is this herxing or not?

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  • #304566
    redrock
    Participant

    I've been on AP since August 3. I have CREST with mild PH. The only symptoms I have are a bit of Raynauds, and since the PH diagnosis, I have noticed a bit of exercise difficulty, which seems to have gotten better since I upped my LDN. I do have a pretty high ANA, 1:1280.

    So anyway, being that I don't have extreme symptoms with my illness, I was wondering what type of herx effect I would get?  The only thing I have noticed is that on the days I take the minocin (which is every other day) I feel a little flu-ish. I take my first dose at 6:30 am and my second at 6:30 pm What I have noticed is around 3 pm on the days I take the mino I start feeling really sleepy and feel like I'm getting a low grade fever. It lasts through the rest of the day.

    Is this herx? Or is it my imagination? Just wondering.

    #350317
    Maz
    Keymaster

    [user=2547]redrock[/user] wrote:

    So anyway, being that I don't have extreme symptoms with my illness, I was wondering what type of herx effect I would get?  The only thing I have noticed is that on the days I take the minocin (which is every other day) I feel a little flu-ish. I take my first dose at 6:30 am and my second at 6:30 pm What I have noticed is around 3 pm on the days I take the mino I start feeling really sleepy and feel like I'm getting a low grade fever. It lasts through the rest of the day.

    Is this herx? Or is it my imagination? Just wondering.

    Hi Redrock,

    Yes, the symptoms bolded above would be pretty classic symptoms of herxing, as described at the following links:

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

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

    The difference with scleroderma and those with more of an inflammatory component to their rheumatic disease is that herxing may be less evident. If you go to the following link and scroll to “Treatment Summary,” you'll find the following info re: SD:

    https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184

    “Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 100 mg dose.  That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage.  Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch Herxheimer reaction of clinical significance. Other supporting therapies may be continued if not contraindicated.”

    Scleroderma patients do seem to be able to tolerate the Harvard Protocol (100mg mino BID) much better than, say, an RAer with a good deal of inflammation.

    Hope this helps, Redrock?

    Peace, Maz

    #350318
    redrock
    Participant

    Thanks, Maz. I can't wait to see if my lab results show improvement.

    #350319
    lynnie_sydney
    Participant

    Redrock – sometimes bloodwork can “herx” too – numbers sometimes elevate before going down. And improvements in physical symptoms tend to be in very small increments, sometimes barely noticeable at first. It can be good, for this reason, to keep a daily journal. Lynnie  

    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)

    #350320
    redrock
    Participant

    Journal is a good idea. Today it's more extreme sleepiness, never had this before. Initially I only had this on days I was taking the mino but it seems to be spreading to other days as well.

    #350321
    SusanSD
    Participant

    Redrock,
         I remember the sleepiness and naps. In the first year when I was getting leisurely diagnosed and just starting the conventional medicines, I frequently napped and just had to sleep.
         After being on AP for awhile, it seemed like I still napped but more because I wanted to rather than had to. Over time, I napped less and less to the point, where I remarked I've only napped once this whole month and now I never nap.
        Maybe I napped so much in the beginning because the disease was taking over – I was slightly anemic then too. With AP, the napping became more of a way to build my immunity. I don't know if others see it like that. I am no longer anemic, so that may also explain why I don't need to nap now.
        Good luck.
    P.S. I think I herx more now than I did in my first couple years of AP.

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