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Hello everyone! I have been taking minicycline 100mg since Nov 2016. I started out with pulse dosing MWF without much success and upped it to once everyday in Sept 2017 where I began to feel much much better. My Vectra DA went from a 42 all the way down to 25! I am happy to report that as of Nov. 2018 I have successfully weened myself off of prednisone after being on it consistently for 3 1/2yrs. I truly felt that I was so close to remission but have noticed recently that the pain in my joints is starting to return/increase, although the pain is nothing compared to what it used to be. I don’t ever want to go back to taking prednisone if I can help it. I spoke to my dr a few weeks ago who said that upping my dose to twice a day would be completely my call. She warned me that if I were to go up that high and still not feel any relief that we would have to look into other options to add to my protocol. I’m really not sure what to do. Should I give it a little more time for my body to adjust being off of prednisone, or should I go ahead and raise the minocycline to twice a day? I’m just afraid of letting this go too long and backsliding to where I was a couple of years ago…which was completely debilitating. I am my dr’s first patient that she has tried the minocycline on so she doesn’t really have any hands on experience with how to deal overcoming these obstacles and therefor leaves it to me to make these decisions. I could really use some input from some of you with experience. Thank you so much!
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 there, I began at the same dosage, 100 mg per day on MWF. I increased my dosage every 4 months. I think I then went to 100 mg per day Mon-Fri with a weekend break? And then soon after, 100 mg every day, then I added in 100 mg twice per day maybe MWF for a while and continued to increase until I was at my full dosage of 100 mg twice per day, every day. Each time I increased I felt better and better. I was on prednisone for about the same amount of time as well and it took a long time to wean off…I totally understand the fear as you are so afraid it will come back. Stay strong it really seems the mino is working for you. It did take a full 2 years or so before I had ZERO pain. I would definitely try increasing your dosage until you get to the max of 100 mg twice per day every day. It’s worth a shot, so give yourself that chance…it is the only way you’ll know…and give it time. The all over pain relief is slow going. I think the last place for the pain to finally leave was in my toes and fingers…where it all began. After my RF steadily went down over the first two years then my Anti CCP followed suit plummeting 60 pts or so every few months. I went from 291 to 32 in this last year or so. Give yourself time, it will come. Now, that I have been feeling so good, my goal is to taper down to a “maintenance dose” as I prefer to not stay on the full dosage forever. I would love to keep the pain away and stay in remission at the original dosage of 100 mg once per day, MWF. We shall see…if I need more I’ll go back.
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 pmThank you so much for the input! That was very helpful! Like you, it all started in my hands and feet and now that seems to be where it is affecting me the most. I never thought of upping it to twice a day for MWF first before going to every day. I will try that. Do you remember how long you stayed at twice a day MWF only before you upped it to every day?
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 (Not really, but I do recall it being about every 4 months that there was a significant increase. Maybe try the 100 mg twice daily on MWF for two months before upping to 100 mg twice daily Monday through Friday and do that for two months.
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, I will try that. Thanks again!
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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