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  • #467876
    whaleharbor
    Keymaster

    Coco…there’s more than one generic. We only have generics here. If you search around on here you’ll see that some generics work for some and others work for others. It just may be that you’ll have to see which generic manufacturer works best for you. Ranbaxy was terrible for me, but great for others. I’m now on Zydus (was Teva but that formulation is now owned by Zydus)…again that’s worked well for others but not for all. I used to take the Actavis brand but I think they changed their formulation and/or Covid changed something in me…which is why I went to Zydus….but everyone is different and your pharmacy might have access to other generics that you could try for a little while to see if they help.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467874
    whaleharbor
    Keymaster

    The first time the same thing happened to me was when my pharmacy switched generics on me. My preferred generic was not being manufactured at the time and I switched to another brand and slowly got back on track. The second time that happened to me was after Covid. My preferred generic was being manufactured by another company but I had never switched back to it because “if it ain’t broke don’t fix it.” Well…it broke. So I switched to the old (first)formulation now made by another company and it made all the difference. I’m not back to where I was yet…but getting there. “Your mileage may vary” but I hope this helps you and your doctor make some decisions.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467858
    whaleharbor
    Keymaster

    whaleharbor,

    I noticed that you are taking 100 mg of minocycline every other day with food. Is that the highest dose of mino that you’ve ever taken?

    Phil

    Hi Phil!

    When I was first prescribed minocycline the doctor prescribed it twice per day every day – the Harvard Protocol. It made me very dizzy. My doctor worked with the Head of Rheumatology at Harvard (now retired) and we came up with what I’m taking now. There have been short burst of time (a week or so) where I’ve taken it daily…but for the past goodness…almost 16 years now, maybe more, I’ve lost count…the right amount for me seems to be every other day and with food. The amount has gotten me and kept me in remission for most of the time (other than when they switched generics on me and when I recovered from Covid).

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467850
    whaleharbor
    Keymaster

    I’m continuing to document for all of us. I know that when I’ve searched for answers, it was always very helpful to know “the rest of the story” and not just be left in limbo.

    So here’s where I’m at today. Still continuing to improve with the RA I feel…though I’m not “there” yet. The “road back” for me to remission has always been a sort of ebb and flow/waxing and waning thing…and I am still experiencing that. Things started to get a little out of hand when the stitches had to be removed early as I popped one and the wound was infected. I was prescribed a strong antibiotic cream Mupirocin plus more Keflex and I believe it gave me a herx reaction. Anyhow, that seems to be resolved mostly now and now I’m just waiting for the wounds to heal. Honestly the derm did a pretty poor job of closing the punch biopsies but that’s a whole other thing…

    Anyhow, as to the weirdo red area(s)…negative for cutaneous lymphoma (thank God). Negative for morphea. They came back as possible lupus but the derm didn’t think so because he said it didn’t look like it clinically…plus my crp is way down and all of my blood work was excellent. Also could just be eczema…but it doesn’t itch. Here’s where it gets interesting…could be viral… pityriasis rosea was mentioned or some “unknown” virus. He seems to be leaning towards “unknown virus” He told me whatever it is it isn’t bad and to just give it time to fade. I can’t help but wonder if it is Covid related since rashes are a symptom. Most of the red areas that I had elsewhere have resolved and the area under my breast is still quite prominent but lighter. So whatever it is …it does seem to be improving but doing so ever so slowly…glacially slow. So here we are…

    Not gonna lie, the red area on by breast continues to freak me out…but we wait.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467828
    whaleharbor
    Keymaster

    From limited data /it’s not reported/ about 4.7% women undergoing mammography develop skin tears. Forces used can lead to tissue damage. Unfortunately it’s not a good test.

    My gynecologist told me this is not uncommon. Which of course makes me wonder why on earth we are doing this to women. I had no idea. There has to be a better way. Another doctor I consulted with said that if I had that level of injury, that there would be scar tissue in the breast that would be found next time I had a mammogram and that everyone would freak out and order biopsies etc… He said make sure to remind them of this injury so everyone doesn’t freak out. To be honest, I’m all for getting checked, of course, but this just can’t be. I am looking into alternatives.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467823
    whaleharbor
    Keymaster

    Thank you, Maz for always caring and always responding. I’m thankful that things are almost back to “normal” on the RA front.

    I can’t help but wonder if these weirdo discolorations (not really rashes) are Covid related in some way? The mystery continues. If they resolve and/or if I ever find out what it is I’ll document it here for us all.

    Thank you so much, Maz, for all you do for all of us.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467820
    whaleharbor
    Keymaster

    An update for everyone. At my last check up my sed rate was still well within the normal range and CRP had come down significantly to just over 10…which for me is normal. My crp is hardly ever been in the normal range…though it has happened. I also definitely feel a major improvement overall.

    Now for the weird news. I’ve developed a weird red discoloration on the underside of one of my breasts. This happened right after a mammogram (all clear). At first my gynecologist thought it was bruising after the mammogram…but since it has not resolved…well. Long story short, 3 derms later, a 20 day course of Keflex. and 2 biopsies, no one really knows what it is. I have red areas that itch on both hips and my “belt line” is discolored as well. With other scarier things ruled out from the biopsies (one on my breast, one on my hip), I’m thinking Morphea. My derm neither confirmed no denied that as a possibility. However, there is no skin thickening at all just a red/violet/hyperpigmented discoloration in the areas. Of course, it could just be in the early process of morphea. Given my autoimmune history…it wouldn’t surprise me.

    So…all good news on the RA front as I’m almost in remission as evidenced by my bloodwork. But weirdo issues on my skin that no one can figure out. I’m not sure where to go from here. At this point, I’m waiting to see the derm to remove stitches from the biopsies.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467583
    whaleharbor
    Keymaster

    So I’m feeling much much much better. Am I “back” yet? No…but significantly better. I also had labs done recently. Some good news, some not.
    Sed rate was normal at 9
    CRP was high at 18.9

    However, no anemia or any other weird stuff that I’ve had in the past with the RA…so there’s that.
    Not gonna lie, pretty bummed about the CRP.
    I’m not sure how high that is for me as my prior doctor and I had an agreement that I was on a “need to know basis” because I tend to freak out over the numbers.
    Since he’s retired the new doc (a nurse practitioner who basically fights me but gives me what I need, somehow) has access only to records going back about 2 years…when things were “pretty normal” for me. I have records via Quest going back to 2014 and the highest CRP then was over 12…however, I’ve had RA for 33 years and the early years were horrible…so there’s no telling how bad it was back in the day.

    So…I’m better. Perhaps this flare is coming to an end and I’m closer to regaining myself. I feel as if I am…but I also know that I’m not “there” yet.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467542
    whaleharbor
    Keymaster

    Well, it’s been quite a wild ride on this third “road back” y’all…but still I persist.
    Am I better than I was in say February or March (ish)…yes…way way way better. As I think back to the hard mornings and days.
    However, I have had many stops and starts and waxing and waning symptoms that have been very very very tough. Both times prior I had the benefit of prednisone. This time, I have not. My choice, but still.
    Recently, on a search here, I realized that I posted prior about chamomile tea and how much it helped me. I had totally forgotten about it.
    I keep it in the house for tummy aches etc…but to be honest, I don’t hate the taste but I don’t like it much either.
    Long story short, I’ve started drinking a cup after dinner at night.
    You guys…HUGE difference…HUGE…just as I noted on this board before. HUGE. I even forgot one day because I got busy and I started hurting again.
    I do believe in checking everything out with one’s doctor etc…so if you’re stuck…you run this by your doctor to see what they say. My doc gave me the green light. I think he thinks I’m nuts and that this won’t work…but whatever.
    For me, I can’t even finish one cup because I sorta don’t like it that much…but I get in what I can.
    Anyhow, overall, the progress is really really really slow but there is progress indeed and hopefully with the addition of the chamomile tea …even if it is the placebo effect…will help.
    FYI…do Google Chamomile and Rheumatoid and you’ll see evidence of it’s purported benefits.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467429
    whaleharbor
    Keymaster

    Continuing to document for any and all interested: The Zydus brand of Minocycline continues to keep me on the right path. Like before…there is a waxing and waning of symptoms…but overall, the really really really bad days are lessening and the bad days aren’t as bad. I’m not where I need to be, but I’m not anywhere near where I was. Having traveled down this road before (twice) I know it takes time. But at least things seem to be continuing in the right direction. For those wondering, I take 100mg Minocycline every OTHER day with a full meal. I don’t worry about if there’s calcium or iron or anything with that meal. I understand that’s no “ideal” but it’s what has gotten me into remission before and what is working for me now. “Your mileage may vary.”

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467428
    whaleharbor
    Keymaster

    Wow! Great article!

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467373
    whaleharbor
    Keymaster

    Like you, I also had a flare up of symptoms after recovering from COVID-19. However, there was something else going on that took me months to figure out

    Very interesting…I did a whole elimination thing years and years ago when the RA started and I could never figure out any cause. This waxing and waning of symptoms is similar to what I went through in the past as I progressed to remission. However, I think this is really good advice. COVID could have caused some weirdo change and/or any one of us can get an allergy to anything at any time. I’ll keep a food diary and see if I can see some kind of pattern. Thank you so much for letting me know about that. I’ll report back here for us all one way or the other. I’m leaving no stone unturned.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467370
    whaleharbor
    Keymaster

    Continuing to document for us all:
    Lest anyone think that “the road back” is easy, it’s not. RA is not for the faint of heart and getting through the seesaw of herxing/flaring/whatevering ain’t easy.

    I made it back to remission twice before…setting my sights on thrice even though today is a very bad day.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467366
    whaleharbor
    Keymaster

    Which generic do you take, Phil?

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #467364
    whaleharbor
    Keymaster

    Which generic were you taking when you relapsed, and which one are you taking now?

    Phil

    Hi Phil,

    I was taking the Actavis brand…which I had switched to years ago when Teva divested themselves of their version of minocycline to Zydus but Zydus was manufacturing it yet. The pharmacy gave me Ranbaxy which absolutely did not work…so I switched to Actavis (which was the formulation from the old Watkins)…and it worked well. I never thought it worked as well as the “original Teva” but it got me into remission.

    However (and thanks to you posting about it here) I learned that the old Teva is now owned and manufactured by Zydus. I am now on Zydus.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

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