Need help to restart AP

[rawarrior]

I started AP using Minocycline for my RA back in Nov. under supervision from my Rheumatologist who admitted she had heard of the AP but never used it on a patient until me. She had me on 100mg of mino every other day & said it would take 3 months to know if it was working. 3 months later I was not feeling much better and also wanted to try LDN so she didn’t want to titratw up the mino while I was introducing a new drug. She said if I didn’t feel better by next fall that she would increase the mino. I didn’t feel comfortable with taking an antibiotic for that long if it wasn’t a high enough dose to be affective against my RA so I stopped taking it altogether on my own back in February. Big mistake! I now realize how much it was probably helping because now I am in so much pain and experiencing morning stiffness in my hands that I haven’t had in several years. I want to get back on the mino but my question is – do I have to start back over at that low dose for 3 months or can I increase my dosage at restart? Could I have potentially built up an antibiotic resistance because of stopping? Any advice is appreciated. TIA!

Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (

[richie]

I am taking it for 18 years —resistance not an issue —Big mistake stopping –it more difficult the second time around —your rheumy seems to be taking a longer term approach –IMO thats the right approach –

[PhilC]

Hi,

rawarrior wrote:

I want to get back on the mino but my question is – do I have to start back over at that low dose for 3 months or can I increase my dosage at restart?

It would be prudent to start again at the low dose. As for how long to be on that low dose, that depends on how well you are progressing. In other words, people who tolerate the mino well can increase their dose faster than people who are having difficulty tolerating it.

rawarrior wrote:

Could I have potentially built up an antibiotic resistance because of stopping?

Yes, that’s a possibility, but there’s nothing you can do about it now, so don’t worry about it too much. If it later turns out that the full dose of mino doesn’t seem to be enough for you, you may need to add a second antibiotic (which is a actually a good idea either way).

Phil

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

[CMS12]

Hi RA Warrior – Titration of the minocycline is probably best in order to avoid severe herx. Don’t be afraid of minocycline. I’ve been taking it since 2009 and it is the only thing that has really worked for me. However, you may have to experiment with different generics. If you read through the board all of us saw great and long lasting benefit from brand Minocin but it is now out of reach due to extreme cost hikes by Valeant Pharmaceuticals. It wnent from $70 for 30 day supply to $3,000. Insurers just won’t pay that. For some of us Teva generic has worked. For others Watson, and for me Torrent has worked.

My experience was similar to yours in terms of starting and stopping. I got RA in 2000. A lot of studies had just come out regarding minocycline around then so my rheumy was willing to give it a try. I took it for six months and thought it wasn’t working so I stopped and went on Enbrel. After three years Enbrel stopped working and I was switched to Humira. That didn’t work at all and I lived a couple of miserable years keeping RA barely at bay with diet and minimally effective Enbrel. I then remembered minocycline and that’s when I found this board and Dr. Brown’s book. I realized minocycline must have been working albeit very slowly as at the outset of RA I was nearly bed ridden and when I stopped taking it in 2001 the first time I was able to work part time and take care of my newly adopted baby. So, I went back on minocycline in 2009. I was able to get the preferred brand Minocin. It was a long and arduous process. Two steps forward and one back. A lot of pain. A lot of symptoms for a whole year but then I achieved remission. I stayed there for many years until I was switched to a generic (Teva) that didn’t work for me.

The upshot of my long post to you is this. Take it. It works. If you read my recent post to Richie or any of my posts over the last 3 years you will see the process of recovering with minocycline. I am now nearly back to remission after having to experiment with different generics. Whereas pre minocycline my life and my family’s life was consumed by my RA, now we rarely notice or talk about it. I can do pretty much everything I want to, although years of RA does leave one with less strength and endurance. Nonetheless, I am no longer in pain.

I hope you give this the College try. You’ve nothing to lose. I have had no long lasting side effects from minocycline. I take 100 mg.two times a day on MWF and 100 mg. one time a day on TThS. On TThS and Sundays I take PB8 probiotics in the evening and I’ve had no yeast symptoms.

Cindy

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