Mino= anti-inflammatory.

[Jennhere]

I read another post that says a doc feels mino simply reduces inflamation.  Is this what the studies suggest?  That all mino is good for is reducing inflammation?  Or do the studies that prompted the FDA (which I can't stand)'s approval suggest mino does MORE?  Thanks.

Jenn 

[Cheryl F]

Jenn,

 

This has been at the root of the controversy all along, the question about the mechanism of action.  The studies show that Mino works for RA, but they don't really evaluate the mechanism of action or WHY IT WORKS.  That's the $64,000 question.

Cheryl

[bonnielou]

Jenn, even the rheumatologist I was sent to by the RBF told me he did not believe in the infectious theory, but he would presribe the minocin if I wanted him too. My current rheumatologist was already doing that — so I didn't see any value in switching to him.

I am a little worried that my current doc won't want me to continue beyond the 6 month mark — she has me on both plaquenil and minocin — and I am feeling really good. But she is convinced it is the plaquenil (dosage has been cut in 1/2 since I started last fall) and she feels long term antibioitic use is not a great idea. Well what about long term antimalarial use? How is it any safer?

I have enough medicine to last until my next appointment in April — and then I will see what she will support. I am back to yoga and weightlifting and dancing — I'm not 100% my old self, (I still am sore, and I do get fatigued) but I could sure live like this for the rest of my life. I am very grateful.

BonnieLou

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[lynnie_sydney]

Bonnielou (what a beautiful pic  BTW!)
It is very difficult to get rheumies to believe in anything but the DMARD qualities of mino. If you re-read the info on pulse dosing and mino, you will see how the body does not become resistant to mino over the long term.
In my case, over 4 years, not only have my symptoms improved dramatically, with only occasional and never severe twinges, my bloodwork has all improved dramatically too. My RF started at 692 and the latest reading is 292. To me, this is obviously addressing the root problem – not just masking symptoms.
Stick with your current rheumie and then you may need to seek out a more holistic doc if she baulks at continued treatment after 6 months. If you believe it's working for you (and it seems that you do), you'll find a way. So glad you  are able to  do the things you love again. Be well!

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)

[SusanSD]

Hi Jenn,

     I think the tide will turn and there will be a new understanding of AIs. Here is just a snippet of what recent literature is saying. I don't know if you can get your hands on this article in Clin Rheumatol (2007) Vol. 26 p.1036, but here's a bit from the abstract (bolding is mine):

Title: Rheumatoid Arthritis is linked to Proteus – the evidence.

By T. Rahid and A. Ebringer

 ….. Extensive literature based on the resultsof various genetic, microbiological, molecular, and immunological studies carried out by independent research groups supports the role of Proteus mirabilis bacteria in the etiopathogenesis of RA. New diagnostic markers and criteria and the use of a novel therapeutic protocol in the form of antibiotic and dietary measures are suggested to be used together with current treatments in the management of RA. Prospective longitudinal studies with the use of antimicrobial measures in patients with RA are required to establish the therapeutic benefit of this microbe-disease association.

[Jennhere]

[user=52]Susan(SD)[/user] wrote:

Hi Jenn,

     I think the tide will turn and there will be a new understanding of AIs. Here is just a snippet of what recent literature is saying. I don't know if you can get your hands on this article in Clin Rheumatol (2007) Vol. 26 p.1036, but here's a bit from the abstract (bolding is mine):

Title: Rheumatoid Arthritis is linked to Proteus – the evidence.

By T. Rahid and A. Ebringer

 ….. Extensive literature based on the resultsof various genetic, microbiological, molecular, and immunological studies carried out by independent research groups supports the role of Proteus mirabilis bacteria in the etiopathogenesis of RA. New diagnostic markers and criteria and the use of a novel therapeutic protocol in the form of antibiotic and dietary measures are suggested to be used together with current treatments in the management of RA. Prospective longitudinal studies with the use of antimicrobial measures in patients with RA are required to establish the therapeutic benefit of this microbe-disease association.

Wow… Is that actual proof?  Does that mean it's not “auto immune”?  You know, medical stuff- I get lost even when it's pretty simple.  Are they saying there are on-going studies to determine long term antibiotic/dietary benefits? 

Jenn

[Bill]

Great find Susan ! Thanks so much for that post.  Any thoughts on how to procure a copy of that article??

Bill

[bonnielou]

Lynnie – thanks so much for your post. It is so reassuring to continue to meet 'live' folks who have been doing this a long time with good success and minimal complications. Now that I have RA, I read every twinge in my body differently.

And Susan, I agree — a fabulous find. I have an academic library where I work — I will see if one of the research librarians can get hold of this article. Thanks!

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[SusanSD]

Hi Bill,

      I have a copy of the article, as part of the literature review I'm doing for the RBF proposal. It is available through Springer – don't know if your local library can get you a copy or not, or has interlibrary loan privileges.

    I've skimmed the article but have had to set it aside now the the proposal is focusing only on scleroderma. But I may use it to make the link that RA and SD have similar symptoms so it follows they may have similar etiologies.

    If you can't find a copy, email me and I can send you one. It makes excellent bedtime reading (NOT) ; )

[Bill]

Thank you Susan.

 I wil try to locate one.

Bill

[richie]

Hi

Cheryl put it well –the answer is yet to be found –but lets just say its only an anti-inflammatory for discussions sake  –thats not bad –Inflammation goes away or is reduced tremendously -as a result  joint damaged is negated –the person feels well and is able to enjoy life –doesnt sound bad to me !!!!!!!!!!!!!!!!!!!!!

Richie

[Author]

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