Anyone with longterm RA successful on AP ?

[anno]

Kate, I guess I should chime in here & say I take only mino & am doing really well. I can do just about anything without pain now, except put my weight on my wrists. I hope to be able to do 'salutes to the sun' (yoga) again sometime this year. Meantime I can go canoeing, chop vegetables, carry buckets of stuff, etc. Before ap it hurt to brush the dogs or open a door!
I hope others will add their 2 cents.

[Fran]

Kate-  I did well on mino and felt as though I went into remission with no symptoms and my bloodwork returned to normal, except for my ANA.  I had to go off mino due to an allergic-like sensitivity to it that I developed.  I then was on nothing for almost a year and then the RA came back and is very bad now.  I am unable to take mino anymore and have been on doxy for almost a year now and also clindy IVs but am not able to get it back into remission and am not doing that great.

I think the mino was helpful in reducing my symptoms, unfortunately I can't take it anymore.  My RA came on basically overnight too and pretty much affects every joint in my body.  The mino dose I started on was 200 mg per day every day and then I slowly dropped it down as my body became increasingly more sensitive to it.  At one point I was only on 25 mg MWF.

[bonnielou]

Hi Kate — I am not sure if 3+ years counts as long standing RA, but mino has worked well for me. I take 100 mg MWF — and I still take a maintenance dose of plaquenil (200 mg just Sat/Sun). I work a demanding full time job and feel pretty good — a little bit of fatigue still carries with me.

I started a yoga teacher training program in January — 3 years ago I had to completely give up yoga and didn't know if I would ever get back to it — my shoulders, hands, knees and feet made it impossible. I am not as strong or flexible as the other students (I am also 25 years older than most of them!) — but I am so thrilled to be there. It's possible.

Bonnie

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!

[Anonymous]

Any way to get roxithromycin in the USA?

[Maz]

[user=1656]karenlr@cox.net[/user] wrote:

Any way to get roxithromycin in the USA?

Hi Karen,

According to this Wiki link, unfortunately, no…roxithromycin isn't available in the US:

http://en.wikipedia.org/wiki/Roxithromycin

“Roxithromycin is available under several brandnames, for example, Roxl-150, Roxo, Surlid, Rulide, Biaxsig, Roxar, Roximycin, Roxomycin, Tirabicin and Coroxin. Roxithromycin is not available in the United States. Roxithromycin has also been tested to possess antimalarial activity.”

Great shame as it also possesses some anti-malarial activity, which would be a great double-hitter for Lyme patients with babesia. 🙁

Peace, Maz

[trish]

Hi Kate – I, like Bonnielou, am not sure if 2+ years with RA counts as “long term” but I have been on AP since the beginning (MWF 100mg twice daily) and am about 90% improved.  So, not a cure, but a heck of a lot better than at the beginning.  My RA came on really fast (within about 2 months from slightly stiff fingers to fingers swelled like sausages and unable to make a fist, not even close). I was almost crippled as it affected fingers, shoulders, knees, ankles and feet.  After 3 months on AP I started to get better, initially 50% better then slowly up to 90% better after a year on the AP. 

I am doing this pretty much on my own with little or no support from my rheumy or GP. I can't afford to go see an AP doc here as they are SOOO expensive. 🙁  I see the rheumy once every 6 months now and my GP 3-monthly for meds. They are tolerating me at this point as I am so much better than I was. I still have little flares occasionally, but I think it is mostly due to diet or inactivity. I get all the encouragement to continue with AP from this Board.

The only prescribed meds I take are minocycline, brufen retard (for the inflammation), and codalgen for pain when I need it.  I am also taking etidrate for bone density.  Supplements I am taking are fish oil, calcium, MSM, and glucosamine/chondroitin.  I have regular blood tests (about 2-monthly) mostly to make sure my liver and kidneys are coping with the brufen.  So far they are fine.

I, like most people on this Board, am reluctant to take DMARDS or biologics because of the negative comments people have posted about them.

I can only encourage you to try AP for yourself.  The reason I gave it a go was because I knew it wasn't going to harm me because it is such a mild antibiotic and the dose is very low.

Best wishes
Trish

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