I just started minocycline for my RA last week. I read a book called "The RoaD Back" too this week. It's like Dr. Brown (author) took a peek inside my life. HE knows the disease so well. He said the first symptom of RA is fatigue, then a joint pain will appear and it may move around, then weight loss or weight gain if you tend toward a bigger build, depression/sadness and then anemia. He helped so many patients reach remission with slow steady progress of antibitiocs. He said it may take 6 months but people who failed with metheltrexate and gold even reached remssion.Over 10,000 patients he helped. I wish I had the guts to start earlier, I can honestly feel it working. My back is hot and tingly.

I had an idea that I might build up a tolerance to minocycline , but he wrote he hasn't seen it in the tetracycline family. The dose is so small.The risks are so small too. I keep reading testimonial after testimonial at Roadback.org .
I know how painful RA is, somedays my knees swell up so bad I can't stand to stand.
A week after the birth of my son , I had mastitis(breast infection), so I went to the doctors and they tested the skin and then later they told me I had a Staph infection, I probably picked it up at the hospital I gave birth. Soon after that I got my firts joint pain, I thought to myself there may have been a connection, I don't know but now I have RA and when I read about people who had RA & now don't you can bet I want to be one of them, in remission.
By the way , I take sulfasaliazine and prednisone 5mg along with the minocycline, so I didn't have to stop my current medication. It did make me flare up a litle, but most (80% )said they felt worse before they felt better.

If my number go down CRP 220 and ESR 29, I will post it for sure, but it may take a couple months.

Good luck, ValsMum. I tried minocycline for six months but, unfortunately, it didn't work for me. I've been on methotrexate for a year now and doing better. But I wish the minocycline had worked partly because I worry about long term use of mtx.

Did you feel any tingly feelings in you back/body? Did you have that herx reaction, it feels like a flare?
How long did you have RA before trying it? Can you try Doxy with metheltrexate, sometimes I hear you have to wait longer than 6 months?
Do you play around with your diet?
I can't eat dairy, nightshades and now it seems best to stay off most grains and fried things, not much left, but I hate pain.

Didn't mean to ask so many questions:)

Best to you, take care.

I am celiac so haven't eaten gluten in more than 20 years. I tried NSD almost two years ago before my RA diagnosis when there was a suspicion it could be AS. It didn't appear to make any difference. I've also tried fasting but can't do it for too long. I felt slightly better while fasting (but that was in the early days before the RA got so bad). When I ended the fast, everything returned the same and the improvement was only minimal and may have been in my head!

I was diagnosed eighteen months ago. The symptoms began at least a year before that and I may have been experiencing symptoms for a while before that. The RA got very severe by early last summer when my ESR shot up to close to 100 and my CRP to 110.

It has taken almost a year of being on mtx for my ESR to return to normal (as of last blood test) but my CRP is still slightly elevated.

I started the minocycline in the spring 2009 just after my diagnosis when the RA was getting very bad. I took it until September 2009, possibly not long enough. But, by then my inflammation levels had got so high my doc was worried about internal organ damage so I agreed to go on mtx. I didn't try both at once because I was worried about how toxic mtx might be and wanted to be sure I knew what was causing problems if I got sick after starting it.

Don't worry about all the questions. If my responses help you or others with RA, I'm really happy.

Oh... and no, I didn't have the tingly feeling or a herx reaction as far as I could tell, but I was getting SO sick by then that I'm not sure I would have been able to tell. I went on a fentanyl patch shortly after because my pain levels were sky high.

Thanks Wendy for all the information. I wanted to mention something about the minocycline. I started at a high dose, it is called The Harvard Protocol. Minocycline works as a DMARD, and I started out way too high..ouch. 200mg everyday, it put me in a bad flare I could not bend my knees. I had to cut down to 100mg once or twice a week.
Most (80%) of the people in remission from minocycline had a herx reaction first, that is, they felt worse before they felt better. Some felt worse for months. That was the case for me, I haven't had a flare like that of two weeks ago..ever.
Minocycline has worked for about 80% of the people that try it.Some go from feeling just 25% better all the way to remission. I hope I am in the 80%. What I have noticed is the long term commitment it takes. I read the testimonials and sometimes it takes 6 months to one year before the sed rate goes all the way down to normal/remmission.
What I also read in the book "The Road Back"
is that DR. Thomas Brown would use prednisne occasionally up to 10mg so the medication could penetrate the joint. I REALLY recommend reading the book, it gives a lot of hope. There are pictures and stories of patients that suffered 20 years + and finally reached remmission. Dr. Brown really knew the disease so well, i can't emphasize that enough, that is probably why I like the book so much. Well I'll have to be patient now and just hope for the best.

Is that the doctor who gets people off of psychotropic meds as well? Does the RA have something to do with his view of antidepressants? Hmmm.... I get more interesting reading material here. I hope it works for you

What about psychotropic drugs? I never read anything about psychotropic drugs, Dr. McPherson Brown has been deceased for many years, he only worked with arthritics and his approach was basically simple, using antibiotics to treat arthritis, mostly from the Tetracycliine family. I never read anything about antidepressants or anything outside of him treating arthritis.

As the patients healed he would see depression lift,brain fog lift, joint pain dissapate, etc. He really wanted to help people and since he helped over 10,000 patients, he knew this disease inside and out.I was amazed at how accurate he knew how the patients felt, physically and emotionally. Well if the antibiotics don't work for me I will be honest. I too would like less pain and suffering. This year has been the most physically painful year of my life, I wouldn't want to repeat it it or see anyone else have to go through something similar. So I'll report back in 3-5 months or so and hopefully I'll have some good news. If not I'll be trying another DMARD.

When I go to http://www.theroadback.org/ I find a site that tells people how to get off of psych meds. I am so confused.

Hi Erica,

Try this link instead: roadback.org

Reading more and more about how problems like inflammation, auto-immune, depression and even autism could be originating in the digestive system, and treated with diet and antibiotics, seems to be gaining traction lately.

Like this recent article from Huffington Post:

5 Steps to Kill HIdden Bugs in Your Gut That Make You SIck

Perfect! Thanks

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.

Teehee... 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.

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

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.

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.

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.

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

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.

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).

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

Hi Phil,

I can't eat nightshades either or I'm in trouble.

How long after you changed your diet did you feel relief ? Do you take zyflamend everyday or as needed, I never heard of it?Where do you get it?

Thanks,
Sheri

There was one or two references in the book to USpA and antibiotic, but yes it is more geared towards RA ... I do not know if there is any link between RA and USpA, but if the theory of the link between AS and the gut is correct, then theoretically antibiotics can be used to treat AS.

I am not sure if it will do anything for me or not, but I am not willing to not try any method of treatment.

I stopped eating potatoes sometime before Thanksgiving of last year, maybe October. I really noticed the morning stiffness diminishing by late November. I know everyone is different, but I would say a month at least to see any results.

At the time I didn't know what all the "nightshade" family consisted of, but now I try not eat them. I do enjoy salsa though, and so far it hasn't seemed to give me any trouble. Bottom line though, I try not to eat any potatoes, from time to time I will get some fries though, maybe once or twice a month ... so far it has not caused a flare up.

As for Zyflamend, I take it twice a day, with lunch and dinner. I have never heard of it either until the doctor who perscribed me Minocin recommended it. I initially bought it at the local natural pharmacy, but now I get it online. I was paying $76 for 120, just got 144 for $36.

here is a link to the website for it:
http://www.newchapter.com/zyflamend/zyflamend

Phil,

How are your labs, as far as inlfammation goes? Do you have a high sed rate? Has it improved with the changes you mentioned above?
Thanks,
Sheri

My veins have been hard lately when I get poked for an IV. The other day I was poked 5 times in one arm by 2 different RNs, they were both expereinced too. Is vein hardening common with prednisone &or RA?
Kinda creepy. It happened the next week too, another couple of nurses poked me 3 times and said my veins were hard and could not get the iv to work. ??? If you have heard of this let me know, thanks.
Sheri

Hmmm... my veins seem to be developing some slight scarring from the endless rounds of blood tests but I wouldn't have described it as hardening.

I'm curious if you learn any more.

I haven't been on it long enough to get checked yet ... I go back in march

Well it's been 6 months. It didn't go exactly the way I had planned.Around month 4 my anemia got really bad because of the constant inflammation and it scared me, my hemoglobin was in the 8's and I was told I may need a blood transfusion. This coupled with a lot of pain made me choose something in addition to minocycline, I chose Orencia.It is my first biologic and I was terribly scared to start it. But for me, the unrelenting pain day in and day out basically drove me to do something to relieve myself. My inflammtion was just too much for me.

So anyway,
The 5th month I started with infusions of Orencia, so far I have had 3, 2 weeks apart. I have no swelling or stiffness in my knees or wrists anymore. My doctor told me I look the best he has ever seen me. I don't know what to attribute it to because I couldn't hold out the entire 6 months on minocycline alone, so I screwed up the results.
My lower back & sacrum still hurt and I want to get further testing to see if I have A.S.
I know there are a good number of people that have had a lot of success with minocycline for rheumatic diseases. I definately think it is worth a try. Before I started Orencia I noticed the minocycline helped my wrists and knees, but the pain in my sacrum/lower back never let up ,hopefully it will soon.

Lastly, roadback.org has a lot of testimonials and info about antibiotics for rheumatic diseases.

Hi Sheri,

I'm glad to hear the Orencia is working although I can see why you are disappointed not to be able to finish the six month test of minocycline.

My anemia was getting worse as well before I gave in and went on methotrexate. I think you can get to a point where you have no choice but to accept the more serious drugs because your life is at risk if you don't. That's certainly how I felt.

I'm about to switch to injecting methotrexate because I've developed debilitating nausea for 24 - 48 hours after each dose of the oral methotrexate. I'm so hoping that will put me back to where I was a few months ago. I seem to have been going downhill for weeks now.

I wonder about the lower back and sacrum because I've been experiencing that intermittently as well. I've thought it might be because I have to sleep on my back because of my painful shoulders. Sometimes it's bad enough that I'm limping but I also have days when it's mild so I'm not sure what to make of it.

Thanks for the update on the minocycline. I've been curious about how you were getting along.

Just got my labs back, they are the best in a year and a half, best since my diagnosis. Sed rate is normal... finally and crp 1.70,so it has come down considerably. I hope I continue to improve.

That's brilliant, Sheri - great news!

Hi Wendy,
I stopped Orencia, I have 2 close relatives with cancer, colon and breast. It helped a little but I wasn't ever pain free and I sort of thought I would be without pain while on it. Again,congrats about getting off prednisone.

Funny - that's what I hoped for with methotrexate - that I would be pain free while on it so it would be worth the risks. I am much better than I was without it but it's disappointing to still have notable pain.

My sed rate is in normal range, finally. I had to eat a strict "No Starch Diet" . No dairy , no grains,no nightshades & just a little sugar. I eat chicken, turkey,fish,honey, non starchy fruits and veggies. It took awhile but finally I am in normal range. I am still weaning off of prednisone and am alternating between 6-7mg and tapering at a pretty slow rate of 1mg a month. For me the NSD diet is a HUGE part of lowering my sed rate. Just thougt I would update this post.If I get off prednisone this year and my sed rate is still in normal range and I am not in pain alot, I suppose I might qualify as a success story for kickas