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mig #414162 09/28/10 02:42 AM
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Perfect! Thanks smile


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Dow #414164 09/28/10 02:47 AM
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Sorry EricaK, I typed in the wrong website in the first paragraph/post. Mig posted the correct website. Thank you Mig.

I read the article you posted Dow, pretty interesting. I went to an osteopath a couple months ago and we were talking about RA and he told me a woman patient of his improved on the antibiotic Flagyl. He doesn't usually treat arthritis, I went to ask him about some allergy tests. I looked up the information on Flagyl,and some of the side effects scared me, but I'm such a Chicken Charlie it takes me FOREVER to try any new medication, so I just made a mental note of it.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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Teehee... smile it's funny, because I had just posted that depression/anxiety/spondy topic earlier in the week and then the link took me to what appeared to be a psych site.

And I thought... VOILA! I'm such a flippin' genius. clap

But then I couldn't find anything about antibiotics on the site which greatly diminished my self appointed genius status. laugh2


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Jul 2010
Posts: 1,190
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It's only been two months since I started taking minocycline for my RA so I believe it is too early to tell if I have had any improvement.(my hands and wrists don't hurt anymore but my knees are really bad??)
I want to come back at 6 months and report my numbers. However, I did just have 5 days of a clindamycin IV and it helped my knees tremendously. Last week I could not straighten them in the morning, they were just sort of stuck in a bent position. I could reach for the prednisone, but I didn't want to have to taper back down. The last day is when I felt improvement, no not a miracle but improvement and my kneecaps didn't look like grapefruits..yay.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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I mentioned in the previous posts to this thread that I would update my experience with minocycline after trying it for a few months. I learned that in severe cases it may take 1-2 years for a severe case of RA to reach remission. I am near my 6 month mark, however a few weeks ago I could not tolerate the ongoing pain. I am trying Orencia in addition to the minocycline. My rheumatologist told me it was okay to stay on the minocycline for now. My wrists are great and my knees seem better than before I started minocycline. My swelling is minimal , but labs are still pretty bad, that is why I am trying Orencia. I want to get off prednisone too and I hope Orencia helps me to get off this awful drug.
I can take both Orencia and minocycline together and for now this is my course. I neeeded more pain relief and something stronger for my situation. Right now my sed rate is 35 and my CRP is 32.4, so I have to get rid of inflammation.

I will update if something remarkable happens in the next few weeks or months. I have only had 2 IV's of Orencia. I think I was told on the 3rd or 4th infusion I will feel a little improvement.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Dec 2008
Posts: 5,231
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I'm fascinated to follow your progress Valsum. It was a combination of severe pain and high CRP and sed rate that triggered my decision (and my doc's) to try something else. However, it was recommended that I not combine minocycline and methotrexate. I think too much strain on my liver. Plus I had not only shown no improvement but my CRP had reached 110 and my sed rate almost as high so things were getting a little scary.

I'm still not completely off prednisone but I'm currently trying to work down from 3mg daily to 2mg so I guess I'm slowly getting there.

Best of luck for further improvement.


Wendy

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Methotrexate, Celebrex, Plaquenil
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Hi Wendy,

That is great you are down so low on prednisone, I can't wait until I'm around 2 - 3mgs.Where do feel the most pain?
My highest sed rate was 59 and CRP 10.15 so very similar to yours. I really hope the Orencia works, I took forever to get on something strong and I sure hope it helps. Mostly I want to get off prednisone,anything you cannot just stop cold turkey or you die, is kind of a creepy medication to be on for sure.

So my plan is to get rid of pain and get off prednisone with the aid of Orencia. I still think the miocycline will help me so I am going to continue taking it too.

Thanks for the kind words.
Sheri


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Dec 2008
Posts: 5,231
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Posts: 5,231
Hi Sheri,

My worst pain is my shoulders, with my hips, sternoclavicular joints and feet close behind. Before the methotrexate began to work my hands were bad - couldn't straighten them in the mornings but they improved a lot as did my knees. My shoulders have always been the worst and were the first joints to be affected.

Yes - it is a relief to be working my way off prednisone and starting to lose weight again.

Really hope you have good success.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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I too started Minocycline antibiotic therapy January 1st of this year, so i've been on it about a month and a half. I am taking it for USpA // AS.

I started feeling better before starting Minocin, because I started NSD 2 months before Minocin.

No changes so far, I still wake up feeling pretty good. My SI joints do show inflammation, and that is currently where I feel stiffness & pain, when it happens.

My Rheumatologist isn't too thrilled with me doing antibiotic therapy, she was however very avid about me starting Humira. When I brought up the roadback foundation and antibiotic therapy she rolled her eyes ... rude. She didn't even want to hear me out. I brought up the question of "since Humira is perscribed for Chron's disease, as well as AS, and Chron's is a problem with the gut, then how can you tell me there is no relation between the gut and AS."
She told me they did not know the cause of AS, but made no comment on the link between gut health and inflammation.

As of now I am still taking Humira (started 2 weeks before starting Minocin), but will probably be stopping it after giving it its full 3 month trial.

I stand behind the theory of the link between GI system health and USpA / AS. Once I started making positive changes in my diet, my pain/stiffness/inflammation went down significantly ... to the point now that it does not interfere with my daily life.

I was lucky though, there is a doctor about 45 minutes away that used Minocycline antibiotic therapy to cure her own RA. She said she is all of but a few left in the US who perscribe antibiotics for arthritis. She also recommended following the NSD ... but I believe the source of my inflammation is more from the nightshade family of vegetables (potatoes, tomatoes, egg plant, peppers, etc) ... because once I cut out potatoes (Still ate bread, pasta, rice, cakes, flour, etc) I immediately started getting better.

I too will report what my numbers show when I go back to get checked in 2 months. I really wish more focus on the disease would be geared more towards alternative therapies, specifically antibiotics, instead of biologic medication and NSAIDs ... I think NSAIDs were actually making me feel worse and accelerating inflammation at a faster rate. I am currently not taking any perscribed NSAIDs, only taking natural supplements to help suppress inflammation (zyflamend).


Diag - USpA/AS JUN-10 // HLA-B27+
Humira started DEC-10, every 2 weeks
Started Minocycline antibiotic therapy JAN-11
no/low starch diet started OCT-10
Natural Supplements: Super Joint Complex, Omega 3, Vitamin D3, Vitamin C, Milk Thistle, Men's Multi, Probiotic Blend, Zyflamend
Joined: Sep 2007
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I also have uSpA and have read the Road Back Book "The New Arthritis Breakthrough" It was written or at least concerned a time when little distiction was made between RA and the SpA's. Rheumatogists were classed as either 'splitters' or 'lumpers'.

Of the successful case histories presented I don't recall one of them being a case of Marie Stumpells Diesase (AS).

Initially I thought Minocycline was working - but after a while I gave up - felt it wasn't doing anything.

For people with RA it's definitely worth a try, but I'm not convinced it works for AS.

Maybe someone will post with an opposing few. I know John is a great advocate for antibiotics, but he only took them in relatively short bursts - not for years on end.

Regards David


Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.
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