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I was just wondering how many of you have been on Minocycline for a long time. I started out with Minocin and took it for years until I could not get it any more. It worked great. Am on Minocycline now Watson brand, it is still working well, it has been all totaled at least 14 years since I started this AP treatment. Do any of you have any problems as a result of long term treatment? I am starting to have some IBS issues and wonder if it could be related.
Hi Rose – I’ve been on Minocycline for 10 years for RA. Minocin for 9 of those, although some ups and downs getting access to it. Torrent now. I have some significant hyperpigmentation and before I was religious about taking probiotics some fungal issues, but otherwise I do well. Haven’t had any digestive issues this far. Hope you can rule out Minocycline as the cause of that.
Cindy
19 years in one month from now.No gut issues as I take a lot of probiotics.I found the best are ProBioGen and Mutaflor
Since Jan. 21, 2007 – varying dosages of for the most part Watson generic. Original dosage was 100 mg twice a day, has been as low as 100mg 3 times a week. Have settled of 100mg per day. No digestive issues but have some discoloration on my face. My current PCP thinks the discoloration is a result of a combination of SD, the mino and sun damage. I have tried dosage reduction over the years, Vit. C skin creams etc. nothing has made a difference so I am thinking that my PCP may well be correct.
I’m not quite sure how long I’ve been on mino….over 10 years at q00mg every other day for most of that time. Best decision ever as far as I’m concerned.
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
After pulsing mino, doxy and a dose of clindamycin for 15 years Dr Fry found I had bartonella and switched me to azithromycin 250mg twice a day everyday. I took that for 4 years and the bartonella is gone and I am making great headway now. No lingering side effects. I stopped the azithro last Dec. and I have’t been sick once. I never had any yeast overgrowth anywhere ever. The best probiotic I found is Mary Ruths liquid daily probiotic on amazon. I would start abx again in a heartbeat if symptoms return. I did find that my dry mouth and eyes have improved since I went off the abx last year. Not sure what that means.
After pulsing mino, doxy and a dose of clindamycin for 15 years Dr Fry found I had bartonella and switched me to azithromycin 250mg twice a day everyday. I took that for 4 years and the bartonella is gone and I am making great headway now. No lingering side effects. I stopped the azithro last Dec. and I have’t been sick once. I never had any yeast overgrowth anywhere ever. The best probiotic I found is Mary Ruths liquid daily probiotic on amazon. I would start abx again in a heartbeat if symptoms return. I did find that my dry mouth and eyes have improved since I went off the abx last year. Not sure what that means.
qman, if you aren’t subscribed to the RBF blog, you might want to, because the next blog to be published is an article submission by (now retired) Dr. Fry! How wonderful that he identified your bug and got you well again! Well done sticking with it and finding remission! Do we have your remission story? If not, would you be open to jotting and submitting one? Just click here:
Thank you, qman, for stopping by!
Actually my story is on there from 2007 or so. I was going to update it but didn’t know how. My name is Stephanie Allen and I use to volunteer here. My old log on got lost so I started this one named after my dog….haha. But the exciting news I have to share and will do so here and in my story, is my ANA is negative and I have no active signs of disease period. So let me know if I can update my story or I will post a new one. This is so amazing and I mention Dr. Fry and his lab everywhere I can. Looking forward to his blog. His lab is groundbreaking and we need to get more attention for his work.
Stephanie, thanks so much for your reply! Please just send your update to admin@roadback.org for my attention and I’ll be sure to upload it to your website Story. 😀
I think you’ll love Dr. Fry’s research update when his article is published next Thursday in the Blog. He’s certainly one of the best and do wish these amazing AP docs didn’t have to retire! I was fortunate to meet him with Cheryl at the ILADs Boston conference in 2012, but his research advances have come a long way since his P. rheumatica days and he provides an update on this, too.
Hope you’ll visit here more often! It’s always wonderful to see the “old-timers” return to encourage and inspire the newcomers. Thank you!
I am looking so forward to the blog! I will update my story and get it to you. Thanks for doing all you do!! The website looks great!
Hi; I’ve been on minocycline for 20 years with great results. Thanks to Dr. F who started me on AP with supplements. Stopped my pregression; no more brain fog, improved flexibility, no more raynauds, less pain, less fatigue. Can’t remember all the symptoms now. It took a year of treatment to see all the results. I had been diagnosed at UCSF 40 years previously. The treatments were minimally effective; medications for high blood pressure, digestive issues primarily. I stopped seeing Dr F when I moved and continued with 100 mg of minocycline and supplements. My rheumatologist at the time agreed to continue with the prescription. I am having some current problems and having dificulty finding medical advice. I went to S. Hospital and they reported all my labs were negative, some lung scarring, nailfold evidence of sclerodera was only sign. They wanted me off the minocycline and started me on methotrexate. I had a bad reaction, noticed the raynauds came back,and developed headaches, digestive upset. So stopped S. And have no scleroderma literate MD. Currently I have fatigue( I’m 79 Years old), constipatione ( adding more probiotics), craving sweets even though stopped sugar one month ago. I have little control over my diet since I live in residential facility. I went back on minocycline, but am wondering if I have candida. (Internet browsing ). I would appreciate some advice.
Nancy123
Minocycline 100 mg; probiotics, cozaar, levothyroid, omeprazoleHi nancy,
Were you feeling bad on Mino at the time when you were told to stop it and take methotrexate?
Glad to hear you were able to start up the Mino again.
Your primary doctor should be able to run tests for candida if you are worried that may be a problem (or if they can’t do it themselves they could refer you to someone who could).Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinMy trouble with candida testing is that they were unable to specify whether it was past or present.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF
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