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  • #465973
    whaleharbor
    Keymaster

    Hi Maz! I’m so sorry for what you went through with the prednisone but also so glad that you got through it. It does take immense resolve. As for healing the gut…I’m not doing anything in particular. I’m open to suggestions

    100 mg Minocycline every other day (Actavis Brand)

    #465971
    whaleharbor
    Keymaster

    I want to document “the rest of the story” for anyone else researching this topic on here in the future etc… So at the time of the original posting, I continued trying to lower celebrex from 2 200mg pills a day to 1 200mg pills a day…My doctor wanted me to play with the dosing hoping to get to the lower dose. I succeeded until the world fell apart…and by world fall apart I mean COVID, political and racial unrest, murder hornets, Godzilla…you know…2020. I gave up and went back to 2 200mg pills a day. Predictably all herxing symptoms stopped when I went back to 2 pills a day.

    I discussed this with him at my last appointment and he was ok with that but encouraged me to try again as soon as I felt able. Well, long story longer, I got tough with myself and gave myself a pep talk. My doctor said I could take tylenol as needed to try to come down from the Celebrex.

    I went through the same herx type feelings, pains, malaise etc…but pushed through it. It wasn’t easy. Herxing is awful. It was literally waves of herxing similar to what I went through when first starting the mino but just not quite as bad as back then. Nevertheless, one has to be prepared mentally for it…because feeling bad is scary….herxes are scary.

    So today…I can report to you that I’m on ZERO Celebrex. ZERO. I think I’m past the herxing. “I Think”…I say I think because I know that herxing goes down in waves slowly slowly slowly and one must expect another ripple here and there…but I think it’s settled now.

    Never in my wildest of wild dreams did I ever think I’d ever be able to get off any nsaid. I’ve been on nsaids for 30 years (gasp).

    I don’t know what tomorrow will bring…I’m hopeful that I won’t ever have to take another nsaid again but who knows.

    But for today and for a little while now, for the first time in my adult life, I’ve been on ZERO nsaids.

    AND I’ve not taken a single tylenol…I just powered through it.

    Of course, “your mileage may vary” I did this under doctor’s supervision and he’s kept a careful watch over my labs throughout the process. Don’t attempt any change in medication without your doctor’s care help and guidance.

    For those wondering I’m on 100mg of minocycline every other day – and that’s it.

    100 mg Minocycline every other day (Actavis Brand)

    #465540
    whaleharbor
    Keymaster

    The Actavis brand has worked very well for me.

    100 mg Minocycline every other day (Actavis Brand)

    #465116
    whaleharbor
    Keymaster

    Thank you for commenting, Bonnie and most especially thank you for your insight. I pushed through it and seem to have been getting better…doing those things I know to do to help through a herx. Water with lemon, taking it easy, chamomile tea etc…and I seem to have turned a corner….This “herx” if that is what it was – was so so so similar to other herx’s from mino…I just didn’t expect it from changing the dosage on celebrex but admittedly I did so aggressively (under doctor’s supervision). Things seem to have settled down and will hopefully continue to settle. Weird isn’t it? I thought it important though to detail here in case anyone else experiences this in the future.

    100 mg Minocycline every other day (Actavis Brand)

    #464229
    whaleharbor
    Keymaster

    You can request for a list of doctors in your area on this page below:

    https://www.roadback.org/resources/doctor-search/

    100 mg Minocycline every other day (Actavis Brand)

    #464171
    whaleharbor
    Keymaster

    I don’t take the celebrex with food…but I’m not sure if you’re supposed to or not. I just take it when I take it…and don’t worry about if I’ve eaten or not. Not sure that’s wise though… Of course, make sure to always ask your doctor before changing up any meds etc…and they may be better to ask if it needs to be taken with food.

    100 mg Minocycline every other day (Actavis Brand)

    #464164
    whaleharbor
    Keymaster

    Wow Lynne! Amazing. I’m glad your brother is well. Thank you for sharing!

    100 mg Minocycline every other day (Actavis Brand)

    #464146
    whaleharbor
    Keymaster

    Ellie, I can’t tell you what to do because I am just a fellow patient. I wanted to reach out to you because you mentioned being tired and feeling overwhelmed. I so get that. I suspect we all do here. I went through “the road back to remission twice.” Once when I discovered AP and had to fight to get seen by a doctor. The second time when my pharmacy changed generics on me that caused me to go out of remission and then I had to go through the whole herx process again – after more fighting etc… with my pharmacy (long story). The point is…I get it.

    Whatever you choose to do or not do, know this…your health is worth it. Your ultimate health…you being as healthy as you can be is worth it. No matter what choice you make – health is worth fighting for. YOU are worth fighting for.

    I’m sure others will chime in here with ideas, input etc…as to the “what and how.” I just want to address your “why”. You are the reason “why” and you are worth fighting for.

    Hang in there. You got this…even if you’re tired today…know that you still have this…and tomorrow is another day. Keep us posted, ok?

    100 mg Minocycline every other day (Actavis Brand)

    #464136
    whaleharbor
    Keymaster

    I can only speak for me, I herxed for a year…it’s just that each herx was less and less. It was like throwing a pebble in a pond and the waves come but over time get less and less. Each ripple is less and less. So the bad was each time a little less bad and the good was a little more good until it all evened out and went calm. I don’t recall how quickly I herxed but I’m sure it was before 6 weeks – like within days. Initially…like the first few days I felt amazing and than boom…herx. I reacted quickly to minocycline. I went through the process 2 times (long story, generic was changed on me and it was like I had to start all over again after almost I think 10 year in remission). Anyway, both times it was the same. I hope this helps.

    One more thing…I had been on prednisone and celebrex for years before the minocycline. My doctor kept me on both of those during the first year of mino…and then I later slowly slowly slowly tapered off prednisone all together and reduced the celebrex etc… I think the prednisone and celebrex helped me to tolerate the herxes.

    100 mg Minocycline every other day (Actavis Brand)

    #464131
    whaleharbor
    Keymaster

    Cheryl, I had no idea what you were going through with Claire. It’s all very frightening, I am just thankful that you and your family have the answer. For what it’s worth, I know your rheumy was trying to make light of things, but it’s not funny and yes stress ABSOLUTELY is at play…at least for me as you and I have talked about before. Hugs to you and your family. You are all in my prayers.

    100 mg Minocycline every other day (Actavis Brand)

    #464064
    whaleharbor
    Keymaster

    I agree with Luck20 it could be a “herx” and not a flare (read up on herx’s here https://www.roadback.org/faqs/?faq-category=35.

    However, I’d like to share with you what happened to me in case it can help you. I was taking Minocycline for years…I think almost a decade and in remission with it when “boom” major flare…like major. I was absolutely seemingly overnight back to square one as if I had not ever taken minocycline before. Here’s what my doctor and I were able to figure out for me (1) A few months prior, my pharmacy had switched generics on me. I had been taking the generic from TEVA but they switched to only providing minocycline from Ranbaxy as TEVA was no longer (at that time) manufacturing the medication. Solution: I couldn’t get the TEVA brand so I went with another…ACTAVIS brand and went through the same process as I had before to get back to remission. (2) It was a major flare…major major major…but doctor and I had no choice but to give me a systemic shot of prednisone. (3) I think that in addition to the switch in generic, I went through one of the most stressful events of my life. Major stress…heck even minor stress…greatly affects me.

    So…I can only speak for me but when in doubt, I always talk to my doctor. Your doctor might be able to help you figure things out as well…especially if you’ve been through some big stress or any kind of brand change.

    100 mg Minocycline every other day (Actavis Brand)

    #464033
    whaleharbor
    Keymaster

    God bless your daughter and you. I am so glad she is doing so well. Hugs. Interesting that she is on azithromycin and not minocycline. I know several antibiotics work for me (what do I know?) points to the “infection connection.” Hugs.

    100 mg Minocycline every other day (Actavis Brand)

    #464019
    whaleharbor
    Keymaster

    Absolutely @Luck20! I agree and I would never ever ever tell anyone what they should do…how could I? I’m just a fellow patient myself and not a medical professional. I just put it out there in case anyone was wondering if anyone had gotten better on just mino (and an anti-inflammatory). So I just basically raised my hand and said…”welp” for me…this is what I did and this is what I experienced. You do you, Luck20 and I also welcome any and all research because the more we all know…the more we know…and the better we will all be. I never discount anything. Just wanted to put it out there that I never had to venture far into anything else – for me – for whatever that’s worth.

    100 mg Minocycline every other day (Actavis Brand)

    #464014
    whaleharbor
    Keymaster

    I’m an RA patient and not a medical professional, so take this as you will. As for me, I’ve just “followed the yellow brick road.” Like literally I take minocycline (an amazingly low dose actually) and celebrex and that put me in remission after almost 2 decades of what my doctor described as “Severe RA.” In the beginning, I was already on prednisone as it was the only way I could exist…but slowly, slowly slowly tapered off under doctor’s supervision. So I’ve not ventured far from just what my first doctor (who was at the time the Head of Rheumatology, now retired) told me. He was not in favor of much else and voila, for me it worked. As far as “I wish there were more professionals to ask” you probably already know this but just to put it out there for the next person reading this thread that might not know. The Road Back Foundation doesn’t endorse any doctor…but there is a list of doctors maintained and updated based on patient feedback. It’s a starting point for finding the best professional for you. The doctor info request area can be found here —> https://www.roadback.org/resources/doctor-search/

    100 mg Minocycline every other day (Actavis Brand)

    #463934
    whaleharbor
    Keymaster

    I haven’t rotated anything. I don’t know.

    100 mg Minocycline every other day (Actavis Brand)

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