Home Forums General Discussion Need Direction after AP

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  • #329570
    frhorngal
    Participant

    I didn't notice a shift until about 6 weeks into taking the Plaquenil, and even then, it was very subtle. However, once I discontinued it, I noticed a BIG difference in pain and swelling once the drug 'washed out'….so I may end up going back on it. Another drug shift is in the works for me.

    However, I agree wholeheartedly with others on this board who have discussed the diet modifications. Citrus is a major no no for me (flare locked me up so badly I had to crawl up the stairs) as are gluten and soy. I also get cranky joints with too much corn. I did a 3 day water fast and felt tremendous at the end of it…hoping to do one this summer in fact!

    Do you have a naturopath to work with?

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #329571
    patchoulee
    Participant

    [user=1184]David C[/user] wrote:

    Susan

    Thanks for the suggestion. I did noticed 2 ocassions which I think was related to my gut. First time was when I had to fast for colonoscopy and the other was enema colon cleansing. Both did give me relieve of pain in some degree. Also notice lemon juicing and epsom salt bath helps. So will start working in that direction. Hopefully all this will help the AP to reverse my condition. By the way, how soon does plaquenil works after starting intake?

     

    David 

    David,

    I have been on Plaq for 3 years now and Mino for 4 months. My Dr told me that Plaq could take up to 9 months to reach full potential but I started to notice so BIG relief at 90 days. It was a huge help with fatigue and got rid of all my hand joint pain.

    Angela

     

    #329572
    superperroRA
    Participant

    You need to take an anti-inflamatory besides the minocin.
    I would avoid methotraxate and prednisone like the plague.

    I would give a trial to all 3 of the following NSAIDs as soon as possible.

    Mobic, Celebrex and Voltaren.

    Different nsaids work differently for different people. That
    is why I advise you to try each for a few days. (Taking
    two different nsaids at the same time is dangerous.
    You can rotate them though).

    I find that for me Mobic does nothing (some people find it highly effective.)
    For me, Celebrex works okay, and voltaren works great.

    Celebrex and Mobic are COX2 so they are milder on the stomach,
    but they can cause strokes.

    Voltaren is not COX2 so it is harsher on the stomach but less
    likely to give strokes. I take my voltaren in suppository form
    which is less harsh on the stomach than the pill form

    Many people take prilosec (or some other proton pump inhibitor)
    to protect the stomach lining from the nsaids. The nsaids tell
    the stomach to produce less mucus, and the mucus is what protects
    the stomach lining from the gastric acid. The prilosec reduces the gastric
    acid.

    Celebrex is real expensive in the US, but you can buy it for 1/5 the price
    in Canada (for example, at buylowdrugs)

    Voltaren suppositories are not available in the US, but
    can be purchased in Canada (for example, at buylowdrugs)

    #329573
    David C
    Participant

    superrero

    First of all, is there a problem with roadback main page cos I cannot enter into the main site as I normally did. It keeps giving me error pages.

    I'm currently on Naproxen which works pretty good on me. But my recent endoscopy resulf show tiny gastric ulcers. Will wait for biopsy result next week to determine the cause. I tend to have problem with celebrex 200mg tab which gave me stomach cramp on 2 occasions after taking it. Dr asked me to try 100mg tab 2 times a day. Will see what happen

    My xray result on both wrists came back which show a progressive demineralization and narrowing of the ip joints. It was still normal back in January when I first took it but already start showing damagas now. I wonder how much more severe will that be in another 2-3 months if without a more aggresive medication to stabilize the condition.

    David

    #329574
    superperroRA
    Participant

    Everyone is different. For me, naproxen does nothing!!! 🙁
    You might consider taking the prilosec with the naproxen.
    You might consider trying out the voltaren in pill form,
    and if that works, since your stomach is queasy, in suppositories
    I believe voltaren is stronger than naproxen, but we are all different
    (I take voltaren 50mg suppositories every ten hours. You can take as much
    as 50mg every 8 hrs. I also take prilosec 20mg daily)

    #329575
    frhorngal
    Participant

    Hi David,
     
       I don't know how close you are to MA, but my doctors are absolutely wonderful. Message me if you would like more info.

     Also, Have you been tested for Lyme?

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #329576
    David C
    Participant

    Hi, need you guys again to help in evaluating which drugs is actually impacting my condition.  I swicthed from generic to brand name mino on May 15th and seem to experience a new wave of herxing. It was so bad I thought I might need crutches soon to walk, but at the same time also noticed 2 good days in between.

    Rather relunctantly, I started MTX (DMARD) last friday morning (May 29th). Here is the tricky part, I felt pretty good on the same day I took MTX and was able to skip Naproxen (NSAID) for a day which I've never done in 3 months. Will that be my immune system was responding to a new drug & gave me a break in banging my joints OR the AP has started to work. I dont believe MTX has kicked in just a couple of hours taking it.

    Here is the best part, since last friday until now, I've experienced 4 painful days (WITH-NSAID) and 3 good days (NON-NSAID). This is something I have not experienced in the past 3 months. Even now my knees got better in walking.

    EVALUATING PART: If AP has started to work – I consider it a good news. I might even drop MTX cold turkey cos tomorrow (actually today – 12:48am) is the due day of my second dose. If this is the effect of MTX – nothing to boast about. Everything will continue as has planned.

    Does anyone has any experience in MTX about the timing it normally works. I learned from the web that it takes 3-6 weeks to see sign of improvement and 8-12 weeks for a full benefit. Will it work within 7 days?? (Hopefully not cos I want to give full credit to AP)

     

    David C

    #329577
    lynnie_sydney
    Participant

    David – definitely sounds like a massive herx. If it had been me, I would have dialled back the brand mino to a much lower level so that the herxing became tolerable, before introducing mtx. into the mix. As John McDFonald used to say, the aim is to kill the microbes, not the patient. Someone with experience of mtx. will need to answer your question re timing for it starting to work. I will keep my fingers crossed for you that it's AP. However, it IS very early on your revised regime to be seeing gains. Remember that this usually is a very slow road to wellness, which is why we suggest people journal how they feel, cos it's really easy to miss very small increments of improvement. However, you got onto AP really early after your diagnosis, which often bodes well for a good and sometimes fast response. Best and hope you continue to see improvements, 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)

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