- This topic has 4 replies, 2 voices, and was last updated 5 years, 2 months ago by
.
-
Posts
-
Hello everyone! I’m really hoping you guys can help me. I’ve been doing AP 2yrs & 2mo now and was doing really well after about 9mo into it when I upped my dose of minocycline to 100mg daily. But starting sometime around Oct/Nov I began to have some stronger joint pain here and there, however, it wasn’t as bad/intense as it used to be and I figured it was due to recently weaning myself off prednisone`. I posted for help on what to do around that time and someone recommended that I add a pulse dose in the evenings MWF so that’s what I’ve been doing ever since. I haven’t noticed any difference or improvement as of yet but I understand it takes time. However, this past week my migratory flares have started back up going from right wrist one day, to left wrist the next day, to left thumb, to right shoulder, & now back to another area in my left wrist. I am terrified that my RA is going back to the way it was before AP. I was just starting to get my life back together and feel comfortable about making plans without fearing a flare would disrupt my life. In fact, I was literally getting ready to start a course (that I’ve already paid for) this week to start a new career. I’m scared and could really use some advice. If I go to my rheumy she’s just going to suggest I start methotrexate. I’m her only patient she’s ever agreed to try AP on so I’m pretty much on my own as far as navigating my way through this. I will take all and any advice all of you may have to give. TIA!
BTW – on top of mino I take sulfasalazine, 100 billion probiotics, magnesium, and am gluten/dairy free.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 (I had a major relapse in 2017…and here’s what I think happened. My pharmacy switched generics on me…I think that absolutely led to the relapse because when I switched to another generic (the one I had been taking was temporarily not available)…I started to get better again. I think what happened to me was “the perfect storm” of a switch in generics coupled with one of the most stressful life events I have ever gone through. IT was not good. Anyhow, again, a simple switch in generics (plus a major one-time shot of systemic prednisone) got me back on the right track…and then slowly over the course of a year-ish plus, I’m back pretty much to where I was before. So I’m wondering if there has been a recent…and by recent I mean in the last 6 months, change in the brand of mino…My relapse didn’t just immediately happen after the switch. It took a few months. Just a thought for you.
Also FAQ #30 on this linked page also provided me with some insight at the time to share with my doctor. https://www.roadback.org/faqs/?faq-category=35 Maybe this is something you can share with your doc as well?
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Thank you for your feedback! I called my pharmacy to check and they looked back all the way to the past 6 months and said there has been no change to the manufacturer. Apparently my issue must be from something else. I have had issues with my thyroid meds (which I forgot to list in my original post) lately so maybe that is the reason? I’m sorry you had a setback as well but I’m glad to hear you were able to get it under control!
If you or anyone else knows if issues with thyroid meds (in my case, dr switching brand and dose causing my thyroid to be underactive again) can cause a relapse in AP protocol I would love to hear some advice on that as well! 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 (@Maz will be able to shed more light on this and I’m sure she’ll respond in due time but I do believe that if your thyroid med is not working properly for you it will affect the metabolism of your other meds…etc…I’m almost positive I’ve seen others posts on that here. That could be what’s going on. You may want to search this forum but also wait for Maz to respond as I’m pretty sure she’ll have some further ideas for you esp as it relates to the thyroid meds…etc…at least it will give you some additional insight to give your pharmacy and doctors…
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Ok, I look forward to hearing her thoughts on the matter. 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 (
You must be logged in to reply to this topic.