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[Anonymous]

Hi,

I was diagnosed with non-serologic inflammatory arthritis (NSIA) at the Mayo clinic three years ago. I have continuous varying levels of pain from mild to severe without swelling. Three other doctors concur that I have NSIA. I have taken metotrexate, Enbril and Humira with no effect. I insisted that I be given a course of Minocycline which they were loath to give me for the most part, but I asked them why they freely dole out WMD drugs with terrible possible consequenses and balk at giving a trial of a drug that has credible studies and history and that usually has very mild side effects. Anyway, I've been on it for 3 weeks. Anyway, that's my story so far.

Dan

[suera]

good luck dan, it sounds like a good plan andwhat have you got to lose. keep us posted. i myself wonder the same thing about the more toxic drugs being doled out so easily…..i guess the reply is usually to stop joint damage…not sure i buy that.

sue

[Sierra]

Welcome! I think part of the reason doctors balk at prescribing is that minocycline is so slow-acting. It takes at least 6 months for most people to see results with it. I'm doing well on it after 1.5 years. My recent lab tests included CRP and sed rate and those were normal. I do still feel a low level of disease activity and am working hard at refining my diet and doing everything else that I can to achieve optimum health. Good for you for being assertive and getting the medicine you wanted. I think you'll be pleased. I wish you well!

Sierra

[Anonymous]

Thanks alot.  I'm hoping for the best. I happen to be a retired dentist and I guess with all this type of drug on board at least I'll be spared periodontal disease.

Dan

[Sierra]

Yes, but you may find that you require more frequent cleanings. One of the possible side effects is a brownish staining that is, fortunately, removable by a hygienist (or, as I discovered, a long session with an electric toothbrush and baking soda).

Sierra

[isobelle44]

Welcome Dan, Glad you found this board.  Lot and Lots of information here.  I hope you get the results your looking for.  I have been diagnosed with generalized morphea and am on minocycline.  I have been on it for 5 months now and have seen some subtle changes in my skin leasions.  Slowly but finally i feel somethings good are happening.  I wish you the best.  Sharon

[Maz]

Hi Dan,

So great you found this site and look forward to your contributions to the discussion as you progress!  You brought such a smile to my face when I read of your persistance in getting your doctors to prescribe mino. 😀 Way to go!  One really has to wonder if these doctors would take the drugs they dole out, themselves, given such a dx. I've read about several doctors who pursued antibiotic therapy to treat themselves (successfully, too!), refusing to take the more toxic meds.

Just a thought …you may also consider taking a daily quality probiotic to prevent candida and also Vit C (combined with rosehip as a stomach  buffer) to help avert the possiblity of skin hyperpigmentation (which appears as blue/grey or muddy brown spots and patches on the skin). Sun exposure can worsen hyperpigmentation, which is apparently caused by the body's inability to assimilate iron properly while on minocycline….and vit C just helps with iron absorption. 

All the best and do hope you turn things around fast!

Peace, Maz

[Anonymous]

Thakns to all who have wished me luck and given info. If this AP doesn't work I'm going to twist their arm for low dose prednisone which they also don't like to do.. I've read quite a few scholarly studies that say it is an acceptable treatment modality. I know that my docs don't like the idea because of the side effects. I was wondering if any one takes prednisone prn before they go on a trip, vacation, or engage in some other fun or not fun activity so that they can get through it without pain and swelling. I know that supposedly you aren't supposed to start and stop it, but they gave me 20 mg of prednisone at the very beginning of my problems and it was the silver bullet. No pain. No swelling. So, I've been thinking why not take it while on vacation etc., if it relieves symptoms for a particular individual.

Dan

[suera]

dan i don'twant to steer you in the wrong direction i just wanted you to know that i have been taking prednisone for 2 years now, i know that is bad but i cannot function without it, i know there are purists here but i have 2 children and no help so don't have the luxury of laying in bed and that is where i would be without it. can't say what the damage of this has been. i try to take as little as possible,and started at 20mg and now down to 5, that ismyexpirence. i believe even dr. brown said low dose was okay.

sue

[A Friend]

Dan, All,

I just did a search on our new board (using above search window). and saw two posts under this thread mentioned  gum disease.  Also, read that you are a dentist, so will look forward to your comments on a new topic I'm about to post.  I listened this morning to the live radio show with Martie Whittekin, CCN as the host, and Dr. David C. Kennedy, retired Past President of International Academy of Oral Medicine and Toxicology especially discussing things we should know and can do about gum disease.  Martie and he plan for him to speak at least quarterly over the covering months. 

AF

[Lizz]

Dan – welcome! There are so many helpful people on this board that are just amazing! As for prednisone, I'm with Sue, I take 4 mg per day. The mino really started to” kick in “when I started the pred in February, before not so much. You need to take something to lower the inflammation so the mino can work. Best of luck to you !

 

Lizz- RA finally dx 11/07; sulfasalazine 6/06, mino 5/07, prednisone 2/08

[lynnie_sydney]

Welcome Dan – I also congratulate you on your persistence! I wish you well on your Road Back. You cannot go past The New Arthritis Breakthrough book by Henry Scammell as a great place to start. And there is a ton of great information in the Education section of the main page of this site, in case you havent discovered that yet. The best thing you (and any newbie) can do is to educate yourself about what to expect and to get to be a partner with your docs (whoever they might be!) on your treatment and on your road to wellness. Best to you. 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)

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