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After 4 months on minocycline I can finally tolerate 100mg MWF.I herxed horribly for days and weeks just taking 25mg or 50 mg, I never thought this day would come.
It took me 4 months to get to 100mg and my back pain has decreased and my wrists are not as sore. My knees are slowly getting better too. I am really happy. I rarely have ups and downs with my RA, it’s a lot of constant pain all day everyday and all of sudden this week it is letting up. My lower back always hurts and now it’s doing better.
I had to share this good news with all my comrades.Thanks!
SheriGreat news Sheri, it sounds so familiar to my progress. Gradually joints stopped hurting, the little things or tasks get easier. It does take time and I have had some bad flares along the way, but they keep getting less and less. My last bad flare was in Sept. I have been doing AP since Feb 2010 and have had wonderful results, I hope you continue to do well. Joanne
i started off at 200 mg then went to 100. now im at 50 but im having my first flare since the first one i had when i started. I hope its herxing and not a relapse. at this point in time i feel like cutting off my legs and asking for new ones. my shoulders are a little achy. i hope this doesnt get any worse as i just landed a job on the fire dept. and i start friday 😯 Oh well if it gets worse i guess i just gotta suck it up 😀
@gordbentley wrote:
i started off at 200 mg then went to 100. now im at 50 but im having my first flare since the first one i had when i started. I hope its herxing and not a relapse. at this point in time i feel like cutting off my legs and asking for new ones. my shoulders are a little achy. i hope this doesnt get any worse as i just landed a job on the fire dept. and i start friday 😯 Oh well if it gets worse i guess i just gotta suck it up 😀
Gord – may I ask the reason that you’ve changed the dosage so much since starting? Lynnie
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)well when i first got symptoms bob offered me the minocycline and to be honest i had never taken antibiotics before. in fact im scared of drugs period so i have never even really taken an advil. so i refused obviously and went searching for something natural. I tried the Candida diet, it did nothing really. then i hired a naturopath who put me on chelation (due to high lead levels) i got either through steel fitting or plumbing (im a tradesmen) and that knocked the pain out of my upper body but my knees and ankles got worse. eventually i gave up and i found this site and said oh well i guess acne meds are better than the alternative so i went back to the doc and he gave me the mino. when i first started taking it i started at 200 mg M W F but i had a massive reaction and i was in alot of pain and i missed my fitness class and couldnt run for the first time so upon reading on here that a high dose could be bad i went down to 100 MG M W F. after my first prescript ran out i went back and the doc said he didnt support long term ABX use and said he would give me 60 more pills at 50MG. so until i find someone whos going to continue my treatment or if i can convince the doc to keep giving it to me I have to make my supply last. hence why i only take one 50 MG a day M W F. i wanna take 100 now cuz my symptoms are coming back slightly. i got maybe 28 pills left, so i guess i should get moving on finding a way to continue it. Maz gave me a list of docs in my area but they all want cash for me to see them which is b/s in my eyes. My health care is free in canada and the drug info sheet that comes with minocycline says it is used to treat mild rheumatoid arthritis which is what I have. so im gunna take that back to bob and show him. maybe he will loosen up on the idea cuz he says i should just suck it up and take tylenol. I havnt taken an NSAID since this started or before so i have no plans on that. so yah thats where i stand with the whole shifting my dosage
Okay Gord, that makes perfect sense! You could well be herxing (any change of dosage or regime can elicit that) or you could be getting a breakthrough flare – sometimes it’s possible to “feel” the difference. Either way, I think it’s a very smart idea to take the pack info back to your doc and push him for more minocycline. You might also want to take a look and print off this patient information about the use of minocycline as a DMARD from the official ACR (American College of Rheumatology) website- links below: The first is a list of all the DMARDs that are currently used to treat RA (mino is on that list). The second is a specific paper on the site written in 2009 on minocycline’s specific use in RA. Of course, it gives the standard rheumatological line about it being used in mild RA, about it not working on an infection etc etc and that it has a different method of action. But, hey, who cares? For your purposes (to convince your doc to prescribe) it should provide him with sufficient official “comfort” to prescribe it for you. Most western countries look to the ACR and take their lead from what it says – so is an internationally recognised authority. Lynnie
http://www.rheumatology.org/practice/clinical/patients/medications/index.asp
http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.aspBe 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)funny you would post those. those sites are part of my arsenal when i go back to see bob. hes a really good friend of mine so hes not being an ass he just doesnt know i think. i tried to explain a herx and he had no clue what i was talking about 😯 oh and whats a breakthrough flare??? never heard that one before. and will it go away!!?? lol
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