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Hello everyone! I haven’t posted in a long time but wanted to run some results by you and get your thoughts. First, let me give you a run down of my history. I’ll try to make is as short as possible. 4yrs ago I was diagnosed with RA. I also tested positive for Mycoplasma a few months after by a different dr. 1 1/2yrs later I was tested for Lyme and band 41 & 23 came back positive. I was put on doxy for a month but that’s all they did to treat it. I then began treatment with a holistic dr for a year which helped but not completely. I was still in a lot of pain with migratory flares. That’s when I discovered AP and found a Rheumy who would prescribe it. This same rheumy used the Vectra DA test on me in which I scored a 42 (moderate range) but just on the cusp of being in high range. I pulse dosed the mino for almost a year without seeing any noticeable changes so my rheumy then upped my dose to take 100mg every day. This was back in Sept. 2017. It was then that I began to see a significant difference in my pain levels and frequency in flares. I just recently went back to my rheumy for a check up where she ran another Vectra DA and was happy to see that my score is now in the low range at a 25! I’m glad to be seeing results and am hoping it’s the AP doing the job. The only other thing that has changed is the fact that I quit my job as a substitute teacher and have been a stay at home mom this year. I am currently taking Sulfasalazine, Minocycline, Nature-Throid, 100 billion probiotic, and Rayos (prednisone) which I have just recently started successfully tapering off of from 5mg down to 4mg a day. I also avoid gluten and dairy. Has anyone else seen improvements in their Vectra score on the AP? I am hoping to eventually be in remission and feel like I’m on the right track but I am the first patient my rheumy has tried the AP on so I want to make sure I am following the protocol correctly. When or will I ever have to up my dose to 2x a day? How long should I stay at this dose? Is there anything else I need to be doing or taking? Any input is greatly 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 (Hi RAWarrior,
If you are making good progress at 8 months, on a stable dose, in both labs and symptoms, then the dose is working and, if me, I’d stick with what is working. Any change in dose can tip the apple cart and I’d prob save the option for a higher dose for down the road, if needed. The general rule of thumb for RA with AP is that “less is more.” It’s a very slow therapy and Dr. Brown found it could take up to 30 months for patients to turn a corner….so you’re doing great!
In the most entrenched and recalcitrant cases, it can take up to thirty months from the beginning of therapy until the patient clearly turns the corner toward improvement, and the achievement of lasting remission can take several years….In shorter-term cases – and short term doesn’t necessarily mean less severe – complete remission can be achieved in less than six months. —The New Arthritis Breakthrough, by Henry Scammell, pages 269-270
I upped my dose every 4 months to my current dosage of twice daily, every day. I started out 100 mg MWF and after 4 months increased to 100 mg once every day and then 4 months later to twice daily. I didn’t notice any significant changes until I upped my dose. I am in zero pain and considered in remission. My RF is negative and my Anti-CCP is plunging down 30 points or so every 4 months (that is how often I see my Dr and she runs labs).
Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pmOk, great! Thank you both! Just to be clear, I have been on AP since Nov 2016, but have only turned a corner in the last 8 months. I still have flares here and there but they don’t seem nearly as intense so I’m not quite in remission yet…but hopeful. Strangely, my Dr did not run the labs for my RF or Anti-CCP this last go round and I’m not sure why, so I don’t know where they stand at this point. I wish I did though! So I will continue with the dosage I am on. My dr mentioned that if at any time my pain worsens while tapering off the prednsisone she will then increase my Minocycline to 2x a day. I just wanted to make sure I was following AP the right way. Thank you so much for your responses!
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 (It can go either of two ways when tapering off pred and increasing mino dose when suffering pred rebound. The increased mino dose may provide more DMARD relief or it may excite immunity and lead to a herxheimer. The first response is preferable and the second isn’t…it’s tough to go thru pred rebound and herxing at the same time, but you might be one of the lucky ones and do well! Fingers crossed!
Btw, flaring continues to occur until sustained remission is reached. Mino isn’t immune suppressive, like pred is. Over time, though, flaring typically becomes less frequent, less intense, and shorter in duration. Exceptions to this rule are variables like a stressful situation, an acute infection, poor diet, hormone imbalance, etc. that can elicit a backslide in progress.
Everything you said makes so much sense and the exceptions you mentioned are certainly triggers for me. It definitely sounds like I’m on the right track. Thank you so much for your guidance!
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 (
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