Forum Replies Created
October 17, 2023 at 3:17 pm #467583
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.September 14, 2023 at 11:42 am #467542
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.July 5, 2023 at 1:00 pm #467429
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.July 5, 2023 at 12:56 pm #467428
Wow! Great article!June 5, 2023 at 1:30 pm #467373
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.June 4, 2023 at 10:09 am #467370
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.May 28, 2023 at 3:04 pm #467366
Which generic do you take, Phil?May 28, 2023 at 6:12 am #467364
Which generic were you taking when you relapsed, and which one are you taking now?
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.May 26, 2023 at 9:52 am #467359
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. <3May 26, 2023 at 9:42 am #467358
Documenting for anyone reading this in the future: It wasn’t the thyroid. Which is still a good thing.May 9, 2023 at 2:25 pm #467340
MAZ! I had graves disease (hyperthyroid) as a child…treated at the University of Florida with meds (no surgery). Basically, I “out grew it” BUT they told me that I had a big big big chance in the future of going hypo because of what my thyroid had been through. So…I’m wondering…will get it checked. Thanks for the link. Will report back. Maz…my angel…truly…thank you.May 5, 2023 at 3:44 pm #467332
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…April 18, 2023 at 10:02 am #467322
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? <3April 18, 2023 at 6:19 am #467319
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.April 17, 2023 at 11:59 am #467310
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.
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.