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  • #467230
    whaleharbor
    Keymaster

    Question: Has anyone with rheumatic disease who flared after covid gotten back to “normal”…by normal I mean remission or controlled or non-flaring?

    Background:
    To update and document for my fellow roadbackers. So a while ago I posted that I was in remission (again) and off all celebrex taking only 100mg minocycline every other day. I ended up needing to go back on celebrex…taking 200mg daily…usually. Sometimes I’d skip a dose here and there and my doc was ok with that while still on the minocycline 100mg every other day.

    Then…COVID. I think I had it this year. Not sure because all in all it was fairly mild and it was over before I could test. BUT I do suspect that’s what it was because I loss my sense of smell for about a weekish.

    Then boom…flare. And now I’m back to 200mg of celebrex twice daily and upped my minocycline to 100mg for 2 days then 1 day off. My doc is contemplating a medrol dose pack if things don’t calm down.

    I’m just looking for hope, guys.

    Sigh….

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

    #467231
    Maz
    Keymaster

    Whaleharbor, first it’s always great to hear from you but wish it were better circumstances. I’ve been worried about Covid and autoimmunity since the pandemic started and MDs were identifying all kinds of autoimmune markers in otherwise healthy patients who were getting Covid. Early on, there didn’t seem to be any concensus about whether these autoantibodies might be temporary aberrations or if they might portend autoimmune sequalae as a result of Covid. In any case, random case reports have been emerging such as these – there are plenty more if one has time to run searches:

    COVID-19: An Emerging Culprit of Inflammatory Arthritis

    COVID-19-induced psoriatic arthritis: a case report

    All this said, it’s not uncommon for rheumatics to flare after any viral, bacterial or fungal infection. Some docs are developing protocols to help with viral clearance as well as their inflammatory free-radicals. There seems to be some debate as to whether the virus is long gone (where has that been heard before?) or whether lingering latent fragments are causing post-viral symptoms (e.g., Chicken Pox that later reactivates as shingles).

    Have you tried any post-viral therapies or strategies, Whaleharbor? Or thought about tweaking your AP?

    #467233
    whaleharbor
    Keymaster

    Hi my angel, Maz. Thank you for your input and links.

    Right now my doc has me on increased celecoxib 200 twice per day and we upped my minocycline to 100 mg 2 days on 1 day off. She’s offering a medrol dose pack if things don’t improve but I sooooooo want to avoid that if there is any way possible. So that’s the extent of my tweaking.

    Unfortunately, it’s a case of the blind leading the blind because neither the doc nor I are sure where to go from here other than steroids if things don’t settle out.

    I can wait, I’ve been through worse and found remission again more than once (once spontaneously, twice on minocycline).

    Like you, this whole COVID thing has me quite concerned and while I’m not 100% sure I had it, I highly suspect I did. My mother in law was rushed to the hospital and the hubs and I were in and out of the hospital, her assisted living facility and her new nursing home…where…it was documented that they had an outbreak of COVID…so…add that to the loss of smell and voila.

    To document for others, never ever ever before did I have a flare up after any other virus, cold, upper respiratory whatever…only this time and I’ve been dealing with RA for 33ish years. Sigh.

    I guess only time will tell…

    I’ll document my specific case here for others.

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

    #467234
    Maz
    Keymaster

    Let’s hope that with these tweaks that things will settle down for you! Grrr

    There is a quest lab test that can look for past Covid infection. My rheumy ran it for me (IgG Covid-19 nucleocapsid). It looks for antibodies to the actual shell casing of the virus, not the spike (which would be picked up if vaccinated). My whole family has had Covid but somehow I’ve managed to evade it (touch wood) so far by just being very careful. If you would like a definitive answer as to whether or not you’ve had it, this test might resolve that question.

    There are different post-Covid protocols that people are finding helpful, too, like LDN, N-AC, transfer factor, zinc, vit d3 and other stuff.

    Hope others will comment on what they’ve found helpful. Covid, unfortunately, trips up the same inflammatory pathways that affect rheumatics – hence why certain RA meds were approved for treating hospitalized Covid patients.

    Edit to add: PCR also stays positive a long while after Covid infection.

    #467235
    whaleharbor
    Keymaster

    Thanks for the info on the antibody testing. I think that’s a really good idea at this point to get further info on what I’m dealing with.

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

    #467255
    whaleharbor
    Keymaster

    So I’m updating for the benefit of all of us. I know I’ve turned to this board (and now the FB Group) again and again over the years. The information here has been key to my success. I’m trying to document this for anyone else flaring after COVID and, frankly, for myself. I’ve even turned to my own posts on here from way long ago and gotten help. LOL!

    So…here’s where I am today. We ended up increasing my dosage to 100mg every day. I’ve never been able to take that much because usually the vertigo then sets in for me. For any newbies, I did go into remission in the past on an every other day dosage. However, things were not improving…in fact, I was getting worse AND…I’m trying not to take steriods. I know that if I would just even do a systemic steriod shot or dose pack I would get better quicker…but this time I’m trying not to go that route as I’ve been off of them for so long and they always come with a cost. We’ll see what happens because I gotta do what I gotta do, right? I’m just trying real hard.

    Anyhow, so far, so good. I had the usual…”Oh wow, I feel better” followed up with “Oh no, what did I do?” …which is the beginning of the seesaw herx phase of getting my body back into remission that I’ve come to know after 2 prior trips to remission with minocycline.

    Yesterday was a good day RA wise relatively speaking though no where near where I was before. Today…not so much….very very very not so much…but also perhaps ever so slightly not as bad as last week…I think. I’m not sure. That’s what herxing and getting better seems to be like for me. It just sneaks up on you.

    So here I am…again…hoping for the best and looking for the road back again to remission.

    I’ll keep us all posted for our mutual benefit. And if you’re like me trying to find your way back after the dreaded ‘rona…well, we got this…I think.

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

    #467310
    whaleharbor
    Keymaster

    Continuing to document here for the benefit of us all…

    So I’m not improving. In fact, I’m worsening. I had upped the mino to once per day and celebrex to 2 times per day…no relief.

    But I do have some clues…

    Clue 1: I’ve NEVER been able to take the mino once daily because it would cause vertigo. Strangely, I upped to once per day with no issues. Also, I take the minocycline at night (a few hours before bedtime, but still at night) so that I would sleep through any vertigo issues. It was not unusual…even after 16ish years of being on minocycline to have a touch of vertigo if I woke in the night…on the nights I took the minocycline. That hasn’t happened in a while…probably a few months before this flare. Hmmm…am I not absorbing the minocycline?

    Clue 2: The last time I had a major flare was in 2017 when my pharmacy switched me to a new generic because the generic they had been giving me became unavailable. It is available again now, but I never switched back to it because I was doing well. Why rock the boat? But clearly, a change in the generic has caused a flare before. Could my current brand of generic have made a change in their inactive ingredients that is causing me not to absorb the minocycline as I used to. I called them…I’ve not gotten a straight answer.

    New Plan

    I asked my doctor and she approved a switch to my “old brand” the original one that worked so well…(which is now owned by a new company but lets cross fingers that it is the same formulation.)

    She keeps wanting to put me on steriods. I’d rather avoid that if possible. She’s willing to let me try. We’ll see what happens.

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

    #467319
    whaleharbor
    Keymaster

    I got the new (old) generic yesterday and took the first dose with dinner. (I always take it with food or my stomach complains)
    Woke up last night in worse pain. More joints swollen this morning.
    I’ve had herx’s before….but it always usually got better for a day before the big herx.
    This major big badness is new and like immediately.
    What say you? Herx and stay the course? Freak out? Change something again? My doctor retired…my doc now is useless and doesn’t believe in it.
    Help.

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

    #467321
    Maz
    Keymaster

    Hi Whaleharbor,

    I’ve been reading your Covid/RA journey posts with appreciation. No doubt others will be reading these with interest as they search for answers, as well. Viral infections can precipitate rheumatic flares and this nasty virus seems to have some unique abilities, to say the least. Needless to say, I’m cheering you on from the sidelines and hoping you get past this very soon!

    How great that you’ve managed to source the generic that worked best for you in the past and understand your wish to know if it’s constituents remain the same. It’s such a tricky path to figure this stuff out. It’s bizarre how a switch in generics can cause this but many here have reported similar experiences. Dr. Brown’s advice in this type of situation was to have his patient do a washout and he describes his approach both in his book and in his Hypersensitivity presentation (link below). I’ve collected up a few links from the site and pasted them below to hopefully help and save you some energy searching:

    FAQ 21 “The pain and inflammation of herxing is too much for me. What should I do?”

    Pulsed Protocol Doctor Packet: The Herxheimer Flare

    Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis
    Presentation made by Thomas McPherson Brown, M.D. (exact date unknown – probably mid to late 1970’s) Note: see transcript content that is in bold text

    I hope you feel better very soon, Whaleharbor! Please let us know what course you decide to take and how you are doing.

    #467322
    whaleharbor
    Keymaster

    Thank you, Maz for always coming to my rescue. You talked me through remission two times in the past. How can I ever thank you enough? <3

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

    #467332
    whaleharbor
    Keymaster

    So…I’ve had a few days, hours, minutes where it feels like “Thank goodness I made the change in generics…this is going to work.”
    Then I’ve had days where I feel like “This isn’t working. I’m doomed.”…which has been accompanied by a lot of crying.
    All of that is familiar from going through the process of getting back to remission twice before.
    Of course, this time it seems so much tougher. Obviously, I’ve forgotten how bad RA can be – that’s a testament to how well minocycline can work. I have to remember that I don’t have the benefit of steriods as I did the last two times (my choice). Also, not sure if the evil COVID has made it that much harder. Plus 3ish weeks isn’t near enough time. I know that.
    Nevertheless…I persist…hoping to avoid steriods on my road back yet again…
    And so we wait…

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

    #467359
    whaleharbor
    Keymaster

    Continuing to document for all of us:

    The change in generics seems to have made a big difference. A lot of the really scary RA symptoms that were getting worse seemingly by the minute have halted and some are beginning to reverse.

    I think Maz was right in her thought process as posted on this thread on April 18, 2023 at 9:39 am that what I experienced was a huge herx.
    My stomach stopped tolerating the minocycline daily and without food…so I’ve gone back to what worked for me so long ago…every other day and with a huge meal. I know that doesn’t comport with what works for others or what other doctors have advised. It’s just what has worked for me and immediately made a big difference…my stomach can’t tolerate it any other way and it was apparently causing an incredible herx.

    So am I back? Not yet. Not at all… but at least I feel as if I’m headed (finally) in the right direction. I have a long way to go yet and now I’m dealing with a somewhat angry tummy …but here we are and it’s all around looking better.

    So was it “the ‘rona,” some unknown change in the generic formulation, the last vistages of perimenopause, stress, or “just because” that caused me to flare so terribly? No clue…though I strongly suspect it was “the ‘rona” due to the timing etc…

    Anyway, onward…Thanking God that I seem to have turned the corner and trying to remain brave and calm as I fight my way back….again.

    PS Thank you Maz for all you do and have done for all of us. <3

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

    #467363
    PhilC
    Participant

    Hi,

    The change in generics seems to have made a big difference. A lot of the really scary RA symptoms that were getting worse seemingly by the minute have halted and some are beginning to reverse.

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

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #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.

    #467365
    PhilC
    Participant

    I was taking the Actavis brand…

    I don’t like Actavis minocycline. I suspect that it gave me a rash. At one time I thought the rash was caused by my bath soap (even though it’s soap for sensitive skin) because it tended to get worse after showering. However, after using up my Actavis mino I no longer have a rash or itchy skin. I prefer generics that don’t contain any dyes. Unfortunately, one time the pharmacy filled my prescription with Actavis mino and I didn’t catch it until after I’d already paid.

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

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