Flare advice RA

[Dunlop321]

Hi

Had been doing fantastically well using monocycline since 2014. However towards the end of October I started to feel the dreaded RA pains again. At that stage I had been down to 2 minocyclene per week.

I had a blood test in early December. My rheumatoid factor and anti CCp were both down near a record low, however the ESR was near a record high for me (17).

I now have pain in a number of joints and am very tired (two 2 year olds not helping). I’ve increased minocycline to 6 per week and a number of anti inflams to manage pain.

Has anybody any advice for me? I’m very tempted to ring my old Rheumy and ask for some enbrel.

Happy Xmas all.

[Pinkmoth]

Hi Dunlop,
It’s interesting – it seems like a lot of people who have been stable for a while flared around that same time.
Do you know what brand of minocycline you’re using?
When I flared end of Sept, beginning of October, I did a couple weeks of azithromycin. I also switched minocycline brands and now use Torrent.
That really helped me.
Do you have an AP doctor and did they have any suggestions?

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[whaleharbor]

I had a major flare/relapse over a year ago due to a change in generics. It took me a while to figure that out because it took a while for the change to lead to the flare. I was also going through a huge life stressor event that I wouldn’t wish on anyone. Anyhow, I went to my rheumy who changed the generic brand to Actavis…I had been on Teva and that worked well but they stopped making it for a while and the pharmacy I went to would only get Ranbaxy brand which did NOTHING for me. I have a local small independent pharmacy that will special order the Actavis brand for me. But by the time we (my Rheumy and me) figured out what was going on I was really really really bad. I had been in remission for years. Anyhow, he also gave me a systemic shot of prednisone and that kicked started everything back… I went through the same herx process I did the first time around but went back to remission over the next year or so. So..long story longer…have you changed generics? Also, I think sometimes Dr. Brown would change antibiotics for a short period of time and then change back to minocycline later. I think a ring to your rheumy makes sense…but don’t think that you have to give up on AP if you were doing so well…sometimes things just need to be tweaked and then you’ll be right back good as new. Hang in there and please keep us posted.

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

[CMS12]

Hi Dunlop321 – I can only speak from my experience but would offer going down to two Minocycline per week may have been your undoing. Although AP offers improvement and even remission I do believe we have to stay the course by continuing to take a regular dose for life such as 100 mg MWF. I took that for years and was in remission until I lost access to brand Minocin and had to experiment with different generics to find one that worked. Once i found one that worked i had to take it more often to achieve the same results. I would suggest you may be herxing, not flaring. In October it was likely a flare due to your low dose but now that you’ve upped your dose it may be a Herx. Hopefully, you will see improvement but not sure how long that will take. In my experience it usually takes as long as you were off regular dose of minocycline so maybe for you a couple of months. I take Minocycline 100 mg. every day now as MWF isn’t enough for me any longer.

One other possibility is the generic you’re on. If it has been switched to a different manufacturer by your pharmacy that could be the problem. That is what happened to me as it did to Whaleharbor.

Hope that helps. Cindy

[Dunlop321]

Thanks all for your comments. they were a great help.

Thankfully my symptoms settled down, and I am taking my dose 5 times per week. As Cindy mentioned, perhaps it was a Herx, given I started taking my medication, after being so patchy with it.

Fingers cross all continues to go well.

Happy New Year to you.

[Author]

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