Antiobiotic therapy for severe RA?

[rejoyousee]

I'm new here, but have been reading the posts and inquiring re antibiotic therapy for some time for RA. I recently spoke with my rheumatologist re. using antibiotic therapy. She said she only uses it in early stages of RA and that it's her opinion it wouldn't work for me. She wants instead to put me on “stronger” meds.

I am taking enbrel and arava currently. Have been on both for nearly a year. A year ago I was actually bedfast 90% of the time, couldn't even get up off a chair by myself. I can now climb stairs, go for short walks, fix meals…etc.

Is antibiotic therapy suitable for more aggressive RA? I am 59.

Thanks for any help.

Joyce

[MMW]

Welcome to RB.

I may not have answers for you but after all the reading and research I have done and all the inputs from past posters…I would say procede with caution in regards to your rheum. advice.   It does not sound accurated based on all that I have learned.

It seems like you may have to find a AP dr to help you.  (AP meaning one that uses antibiotic protocal for RA).  You could get AP dr referrals for your area by contacting one of the volunteers here.

Based on what many have said,  there are very few rheum. that use or know about the antibiotic protocal.  I would do a lot of research before believing what they say as the final word. 

Be sure and read Scammell 's book “The Arthritis Breakthrough” .  This book is very eyeopening for arthritis sufferers.

Also it is good to have an alternative dr that believes in AP that could also have you  tested with specialty labs for things like LYMES to be tested at IGENX, mycoplasma and the fibromyalgia related bacteria, Chlamydia pneumonia(see Cpn.org) to be tested at TARCI, etc. 

A lot of people here that thought they had arthritis, ended up finding out they had lyme's disease.  This is a whole different ball of wax and  there is much to learn about it since it is a very political disease. 

You could run searches on this site to find some great info.

MMW

[Eva Holloway]

Joyce,

I have severe RA and DM and was at one time on cytoxen (chemo) then Enbrel, Cellcept and all the time on high doses of Prednison. By end of 2007 I was so weak I could hardly move, get out of bed or take care of things around the house. By coincidence I mentioned that I had a bad sinus infection to my pulmonary doctor and he put me on Biaxin. Within two weeks I started to feel so much better. I always beliefed my rheumatologist was knowledgable and was helping me get well. I google anitbiotics and RA and found the RBF and the rest is history. Found a doctor and now I am doing so much better I walk a certain amount every day, do my house work, cook, and finally getting my paper work and all the things that did not get done for a long time: DONE.:roll-laugh:. So yes, the antibiotics help. I am on Minoxin and Biaxin and as you can see on my signature line several other things.

Welcome to the group and once the system gets fixed you will meet lots of interesting and knowlegdable peole that can give you good info where to find more help. I hope you have read the book “the New Arthritis Breakthrough” by Henry Scammell. You will find lots of help there too. Another interesting book I found is: Rheumatoid Arthritis -The Infecttion Connection” by K.M. Poehlmann.

Eva

Eva Holloway

[lynnie_sydney]

welcome Joyce. I second what the others have said. You might want to read this thread also about treating early versus severe/longstanding disease http://www.rbfbb.org/view_topic.php?id=5198&forum_id=1

I would also strongly advise you to educate yourself about this approach to treatment. Only you can decide whether it feels right for you. And, in my opinion, the best place to start is by reading the Henry Scammell book The New Arthritis Breakthrough – which you can order through http://www.amazon.com. There is also alot of info in the education section of our main site at http://www.roadback.org. If you DO decide that this is a treatment option you'd like to pursue, it is doubtful whether your rheumatologist will be the one who will treat you. Most rheumies are not well versed in this approach to treatment, do not subscribe to the infectious origin theory and regard minocycline as a weak DMARD. You would be better finding a good AP doc and most of them are not rheumies. 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)

[wildschild]

I am fairly new to roadback as well. I have had severe RA for 25 years.  I was on Humera, methtraxate, pred, anti inflammtory until May when I had to change insurance.  I started reseaching and found the book “The New Arthritis breakthrought” I went to my GP cuz my rhemy was wanting me somehow to afford all the bio drugs.  My GP ordered the book and read it.  She also talked with someone who was familiar with AP. (I had gotten names from roadback of dr's but they were to far away from me).    I started AP in September.  I have had a very bad October but I think I am starting to feel better.  I started out in October with my hands, feet and knee really inflamed, then those calmed down a bit and then it is my elbows, neck and knee (I am having a knee replacement in december).  I hope it is herxing.

With this therapy you just have to be patience even more so if you have had your RA for a long period of time.  The thing that gets me is when I first got RA I thought I read everything.  I wish I would have found this a long time ago.  I am mad at myself for not keeping on top of new findings or therapies instead of just relying on my rhemy. Definitely get educated! 

Good luck and keep us posted.

 

 

[Joe RA]

I had severe RA  and because I did not know about AP treatment at the time of its onset, I got joint damage in both my hands because I did'nt know and let the (Know It All Rheumy) treat me with his standard pro choice of toxic drugs. AP treatment works it did for me and it can for you too, Please read my testimonial, (In It for the long haul) You will see my progress and please do what the posts before this suggested ….Joe RA  

[Eva Holloway]

wildschild,

when you have RA for a long time yes it will take a long time to get well on the antibiotics. You have to hang in there and take you meds and supplements daily. There is days I forget to take some supplements and I can tell. It's usual the evening doses I miss. I make sure I do take my antibiotics every morning. I am so much better then I was beginning of 2008.  Yes, you have to be your own educator and learn from reading or from other people. Good you have a GP that is willing to work with you.

Eva:D

Eva Holloway

[wildschild]

Thank you Joe and Eva for the encouragement.  I have really needed it.  I awoke this morning with my elbows and hands very inflamed but at least I had 3 good days right?  Eva what supplements are you taking?  I am also doing a gluten free diet cuz I thought that might help my RA.  I have been doing that since sept as well.   It is so hard to go to work these days but here I go.  Thanks again!  You all are great!

:blush:Nancy

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