Can I Quit AP after remission?

[dixiegirl]

So here’s the scoop–Minocycline has taken RA away from my life! Now for the big question–can I stop taking minocycline?

I was diagnosed with moderate/severe RA in 2010. I have been taking minocycline since Sept, 2012.
Within a month of taking mino (100mg, 2x/day) my swelling began to subside drastically. I never had a herx. Now, I am almost entirely symptom-free and feel like my old self again.
Since the first of the year, I have tapered off my mino and now I am on 100mg 3x/week (instead of 100mg 14x/week).

I am pleased with how mino has helped me, but I don’t want to taper off mino too fast and go back to where I was before.

For 1.5 months, I’ve felt fine on 3-4 doses a week. From your experience, what should I do? Should I keep tapering off my mino? or am I risking too much?
How much longer should I take mino?

Are there people with RA who can get off mino completely?
I really appreciate your help!
Thank you so much!!!!!!

And for those of you starting AP–I was a skeptic and I am so thankful I gave it a fair chance. Hang on–I hope it will help you as much as it has helped me.

[richie]

Hi–Firstly –thats fabulous news that you are doing so well –terrific !!!!!!!!!!!!!!!!! –You will receive differing opinions but I am in the corners of keeping a maintenance dose as relapses can and do occur –Its more difficult to get rid of it second time around !Again –really great news !
richie

[mary77]

Dixiegirl,
I “second” Richie’s words! You have had remarkable results. That is wonderful news!! I would caution you to consider a maintenance dose as relapses do occur and did with me. A wise rheumatologist (many years ago) told me to consider this treatment as “indefinite”. I am quite certain he was suggesting a maintenance dose for life…so much better than the harsh drugs used for these conditions.
Mary

[Valsmum]

Conrats! I am happy for you. I read on your sig line you take 5mg hydrocortisone, is that the same as prednisone or is it a cream? I am weaning off the lasts bits of pred and then I will be med free!!! It is very slow going though, and I hae to be patient, but since I am so much better I can’t complain.
I wish I had advice for you, but I do not, I would not know what to do if I were you, but I am happy you are feeling great, that is wonderful news!

Take care!

[lynnie_sydney]

Hi dixiegirl – that’s wonderful news and such a fast response.

Now, I am almost entirely symptom-free and feel like my old self again

.

It seems from your post that it’s been around 9 months that you’ve been on AP. That is not very long. If it were me, I would stick to the 3 x week dose for at least 6 months. I’d also have all my blood work done – inflammation markers of ESR/CR-P and RF and anti-ccp. Only when the markers are completely normal and I was completely symptom free would I consider tapering off to nothing. There are other people who’ve gone off their regime because they are feeling very well and then, when symptoms return, find it hard to get the same result.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[marypart]

Amen to everything Lynnie said.

[PhilC]

Be sure to read this discussion before discontinuing antibiotic therapy:
https://www.roadback.org/forum/viewtopic.php?f=1&t=5123

Phil

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

[m.]

I can’t imagine going off pulsing antibiotics, ever.

My understanding has always been that the protocol is not a cure, but it’s remission. Continuing the protocol allows for continuing remission.

I usually think of it as a “truce”. Since 2008, when I had my first arthritis flare and began AP shortly thereafter, there have been times when I’ve nearly forgotten about my arthritis.

I’ve also gone through periods where my joint pain will increase, then subside again. It’s never been as severe as the initial flare, and luckily an Advil or two will usually take care of it.

Sometimes I’ll get more joint pain if I’m fighting off a cold or some other virus. That bottle of antibiotics is my security blanket, and I don’t ever want to give them up & risk going back to square one.

Just my two cents.

[Alexis1956]

Some good news I hope…
I was diagnosed with PA about 17 years ago. I went on AP within 3 months of diagnosis. I was completely cleared of all symptoms within 4.5 years. My doctor kept me on Minocycline afterwards even though no problems we evident. No big del and all and eventually dosage was cut in half. Blood tests continued to improve. He took me off antibiotics completely over 2 years ago. I’ve been symptom free for about 12 years. For me, PA is a distant memory. Thank heaven! I understand all too well how you feel. Believe me, you are on the right track.

In my humble opinion, whatever you do, don’t give up! AP is a slow fix but a wonderful and great fix!

[dixiegirl]

Had moderate RA for 3 yrs.
I’ve been on Mino for 14 months now.
I have been in total remission for about 12 months (Praise Jesus!!!).
I tapered down on my mino for the last 9 months.

For one months now, I have only been taking Mino (100mg) 1x/week.
I want to quit this stuff and finally have good GI health again.
I know I risk relapse and it might be harder to get rid of RA if it comes back. But…

So…
what is a good maintenance dose?
what is to keep me from just quitting mino altogether?
I never had a herx on mino–maybe I never had an infection or it is totally taken care of. Does that give me any more grounds to stop mino?

Thanks for any help you can give me!

[lynnie_sydney]

dixiegirl – only you can answer that question. I think the opinions expressed after your earlier post still apply. What about your blood work? Are your labs normal?

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Continuing-43793

Ultimately, the decision has to be with you.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Tintap]

I would advise you stay on the MWF 100mg dose of Mino.
I am a living example of what happens if you do not do so.
Diagnosed more that 9 years ago with RA (weeks after the birth of my first child) – started AP within 3 months (along with steroids and pain killers).
Within 6 months I was able to wean off steroids and stop the painkillers. All blood work returned to normal.
Kept taking Mino.

Went off mino got pregnant again – pregnancy was a breeze. Within 2 weeks of delivery RA returned with a vengeance with all numbers through the roof. Went back on Mino again. However this time it did not work that well. Even did Clindy IVs .
Remission is still a distant dream.

So be careful before stopping Minocycline

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