I am new to all this RA and this web site so I am looking for info and ideas. Some of you mentioned Road Back how many of you have been able to get your RA Doctors to try the antibotic treatment.
What antibotics were used and did it help. Do the antibotics take the place of any of the other meds or just more added to the cocktail. How long do you stay on antibotics. My doctor has never done an MRI or X-Rays since my bones also hurt alot I fear cancer but I guess the blood would have shown it by now, how often are your liver and kidney blood work checked I requested it after eight months on meds do you all think my doctor is on top of this or to laid back.
An RA diagnosis can be devastating and scary. I was on my second rheumy when I found www.roadback.org. My RA was extremely aggressive, attacking me almost overnight. The MTX made me so ill, I was so sick and tired that I felt my life was over. The rheumy said to get used to it, that was going to be my life.
I asked him about AP, his response was it was a bunch of phoey and if I proceeded with it, I would be in wheelchair by the end of that year which was 2005.
Roadback found me a AP doctor and no, he is not a rheumy but a GP. He had been using AP for 15 years with excellent results. The first month was horrible with actually feeling worse than ever. But gradually it got better and better. It is not a quick fix. It took me two years to see complete remission. I also had a nasty flare due to a death in the family and a move to Korea but that too has passed.
I stopped the MTX because it was impossible for me to tolerate it. But I know a lot of people that stay on their meds. You need to go on the roadback.org board and ask for a doctor in your area. That doctor will know how best to begin your journey with AP.
Also, this is not a new treatment. It has been around for decades. I take brand name Minocin MWF 200 mgs.
I was nervous moving here to Korea if case I had a problem. I did visit the International Clinic here and was really happy to see how accomodating they were. All the doctors speak English although the nurses don't. It is also the land of socialized medicine and it is great to see how it works first hand.
The only strange thing is that you must die at the hospital here in Korea. The funerals take place at the hospital. Even if you do die at home, they bring you to the hospital. The hospital is also where you see the doctors. There are no separate clinics for the most part. So there were tons of people.
Becky
I've had three different RD's and none have ever even mentioned AP. That's not to say it isn't working well for lots of folks; I just think you'll have to bring it up with your doctor if your interested. Don't wait on them to suggest it. Might turn out your RD will be supportive of the idea....but don't be surprised if he isn't.
If you are on any routine RA drugs including NSAIDS or any DMARDS you should have regular blood test done no less than every three months. So to answer your question; No, if you haven't even been given a single blood test to monitor your medications I'd say your doctor is not on top of things. You can have horrible liver and kidney damage and not know it until it's too late. Insist on regular screening....and if they refuse change doctors. That's negect and I'd be temped to file a complaint.
Hey Bear;
The Roadback saved my life. Dramatic? Not if you were where I was last March when I was diagnosed or even last July when I was forced to borrow a walker from my MOTHER so I could walk at night. The Roadback is totally volunteer - nobody gets paid, and nobody is 'selling' anything. I love them!
Of the 10 docs I approached for AP (3 were rheumies) 9 were willing to prescribe AP. None were willing to MONITOR me. About half way thru trying to find a doc locally, I gave up and flew out of state 2500 miles to go to one of the top dogs in AP.
I was newly diagnosed and had never been on any of the traditional meds except for a couple of Predisone packs so I think that was why I was an 'early responder'. I saw signs that it was working 2 1/2 weeks into AP. That does not mean I didn't later have herxes that made me doubt - just that I knew it was working so I knew I had to hold on until I was better. AP MORE than helped.
Tomorrow will be my 11 month anniversary on AP - I am about 90% there. I would have been more 'there' but like an idiot I forgot my probiotics for 6 weeks (ABX kills good AND bad intestinal flora and you need to take probiotics to replace them) and set myself back.
The antibiotic of choice is Minocin (brand) or Minocycline (generic). There are people who are on the traditional meds and AP but they are weaning off. It is a hard process for many but can be done. I am an AP purist - I think if there is any way in heck you can avoid the other meds (because they suppress your immune system and APer's are trying to rebuild their immune system) then try it. On the other hand, if you cannot handle it without, by all means wean. :-)
The point of AP is to REDUCE the amount of meds you are on. I recently cut my Tramadol to one pill a day. I can do 'no' pills but I'm dragging. I also take one Probiotic (down from 2) and one folic acid for old lady hair. :-) I am about to add in more supplements in order to start working on 'healing the gut". The only supplement I take now is Milk Thistle.
You have to understand that most people are on ABX for the rest of their lives. That was a hard concept for me. Then again, no pain and all for 6 measly pills a week - no problem. LOL That disclaimer aside - I personally - think it is possible to eventually go antibiotic free. That takes a heck of a lot more work than most people are willing to do. It would involve healing the gut and basically rebuilding your immune system with diet, supplements etc. Most people feel better and stop the ABX only to have the buggers come back with a vengence. AP can work when restarted; but it's a lot more difficult to bring under control the second time around.
I had X-rays at the start of AP and am scheduled for another set in September. They also mentioned an MRI and I'm OK with that. :-) You should have X-rays definitely, if only as a reference point.
I had my bloodwork done every 3 months when I was out of state and every time I see him since I've moved in state. Your doc is waaaaaay not on top of this if he is not running bloodwork, IMHO.
I think I got all your questions answered! If not, ask more!
Pip
Hi, Bear/Billy.
I asked my first two rheumatologists about AP. They didn't mention it to me, I asked them. They both were willing to prescribe Minocycline, but neither put much faith in it. I decided to contact a doctor who strongly believes in AP. I got his name from the Road Back Foundation. He is a rheumatologist who specializes in antibiotics to treat rheumatic disease. His website is thearthritiscenter.com
AP gave me my life back, too. I agree with Pip that it is better to do AP without immunosuppressants. My doctor believes AP will still work while on immunosuppressants, but that it will take longer to work (sometimes years longer according to him). But it is important to keep the inflammation down in order for the antibiotic to penetrate the tissue. So some people start out on cortisone, prednisone, kenalog injections, plaquenil, etc, then wean off of these as soon as they are able. I never took any immunosuppressants or other DMARDs and AP worked very quickly for me. Within 3 months I was 50% better, within 6 months I was 95% better (I thought I was in remission). AP does work more quickly for those with recent-onset RA, men, and young people.
I have had X-rays recently and I have had no joint damage while on AP. And I had a very high CCP (also called anti-citrulline or anti-cyclic citrullinated peptide) when diagnosed (indicating a more erosive form of the disease). Minocycline is an approved DMARD by the American College of Rheumatology, but (for some reason) it is often overlooked by many rheumatologists.
I have been on antibiotics for RA for 16 months now. I am able to do all things I did before RA. I can run, dance, wear high heels, open tight jars, etc (all things I could not do when RA struck). All of my numbers are down, too (Rh factor, sed rate, CCP, CRP). I feel 95% better.
Some people stay on antibiotics for life (a very low-dose antibiotic), and other discontinue them when they have achieved remission.
You should have your doctor do blood work (CCP, Rh factor, sed rate, CRP, etc) and take x-rays. Were you diagnosed without bloodwork?
Have I answered all of your questions? Let me know.
Take care, Karin
Are you a Doctor Billy? Why does your signature line say MD?I think Billy lives in Easton, Maryland (MD) not that he/she is Billy Easton, MD