Hi, I am 31 years old and just diagnosed with RA. I am on Minocin rightnow. Has anybody here tried antibiotics ?
Hi, I know several people on this board have had success with it. I am not much help sorry, I tried it for a month and didn't feel well from the side effects, maybe I should have stuck it out. I am sure someone will respond to you with better info than I. Hang in there!!! Welcome to the board. Several people here do antibiotic therapy. Also check out www.roadback.org for more good info on it and a doc in your area that does it. I'm on it, but only sort of because I just started 6 weeks ago and I'm still on
I'm glad to hear your doctor prescribed minocin as a first treatment. That seems rare.
I've been on minocin (AP Therapy) for two years now and just went into remission in December. I had a very aggressive RA which hit hard and fast in 2004. Went the traditional meds MTX until I couldn't stand the side effects and found www.roadback.org.
I must say the first month on AP was horrible. I could hardly get out of bed. But I stuck with it and it was a lot of ups and downs over the two years. I'm glad I did it. I'm painfree but I will never forget my RA days and that pain and fatigue.
Stick with it!! It really does work but it is not an overnight cure but I think it is the best treatment out there.
Becky
Yes, stayed on it for five years and it did not work. I have lots of damage form those years. GOod luck...I do know that it does work for some! As I always say..keep up with your xrays!I am in my 7th month doing AP but along with traditional RA meds. Still waiting for results and another one that AP helped is PIP who will probably respond soon. She is moving right now.I have been on AP for 6/7 months now and can see a difference. I have used Remicade, Enbrel, Humira, MTX, Arava, and Orencia - Remicade was great but quit working and since then it had been a roller coaster - then my rheumy suggested the AP. I also take a probiotic with it and so far so good - none of us react the same to meds so what may work for one may not for another. Good luck. Hugs and good vibes.
Hi, I took an antibiotic medication years ago, then to plaquinel then to Mtx. I don't remember why the change. I'm on prednisone, mtx and remicade right now.
sarah
Hi JustGotIt!
I'm on AP and had a really severe case of PRA (Becky - you were severe too?) I was very lucky in that I was an early responder. Within a month I could open milk jugs again and stopped shuffling! I got so much better my husband and I decided to move to let me go after my dreams (you know you always put them off) and we just moved to LA. I'm sitting in a hotel in the Marina wondering when I will ever find an apartment and all my stuff is STILL in a truck parked on the side of the road. Sigh.
If you lucked out and got a rheumy to prescribe Minocin first up - go to the Roadback or www.rheumaticsupport.net and just lurk and learn. AP can be a hard road but it's the least damaging long term. Eventually you will get your life back!
What is your story?
Pip
P.S. Bonny - saw an apartment on the PCH - couldn't have been more than 5-600 sqft - that had ocean views and a beautiful garden and a wave pool. Sigh. 00 a month. We were trying to figure out if we got a roomy, could we afford it? Could we fit our stuff in it if we built a loft? Sigh. No. How do people afford to live here?
As much as I would love to give it a shot, I can't take the Minocin. :( Is minocin the only antibiotic that is used in AP therapy? I have read they use doxicyclin, too. I tried minocin. I have read that some debate that the antibiotic is working because it as an antinflamatory property, not that it is curing an infection.Daisy,Sarah,
That is SOOO wonderful the enbrel and MTX have worked for you for 7 years!!! I bet it took a while for you to find the right mix, YAY!!!!I hope everyone does!!!!! I am still working on it
Karen
Pip,
my story is very simple. last year same month, I had swelling in couple of my finger knuckles. I was in Doctors office for annual checkup so I showed it to her. She said we'll check for inflammation. I didn't know what is inflammation, and I am computer programmer, so I thought it must be because of overusing my fingers. Ignored. for whole year, swelling came and go, but limited to my fingers only. then I started having pains in my knees..not so sharp..so again ignored..But meanwhile I was reading about Arthritis and thought I should follow up my last year's dignosis. So this year I did. and found out that I have RA.my RF factor and sed rate is liitle over the limit. But my ccp was >100..But still I don;t have many symptoms as such, so my Rheumy prescribed Hydroxychloroquine..started having vision problem in a week.so stopped and she prescribed Minocin.
Yes.I read "New arthritis breakthrough" and believe in Antibiotic therapy.So just asked doctor about it and she herself said that will be good idea as I don't have many symptoms. But I wanted to go to Experienced AP practioner.So found one in my area. But don't know here doctor don't give much hopes. He was like I should take Antibiotic + MTX. But I was reluctent to start on mtx. we have 5 year old daughter and were thinking of having second child now..and this news came..so don't know what should I do. I have mild RA, don't want to get it severe after preganncy but do want second child..
I take omega 3 fatty acids + multivitamin with it. Juist started on it from 1st april.So don't see any differnece yet. Started Yoga and Pranayam, not consistent thogh. I never had any real health problems nor anybody in my family..
I was freaked out initially, but now I am okay. My nephew is Doctor and he says I'll be fine. So being optimistic.
Thanks for all the support here.
One more thing to add, my X rays came out okay.Didn't help me. Tried it for 10 months. :(
Hi Pip:
My RA was diagnosed as severe and very aggressive. Thank God for AP! My rheumy said I would be in a wheelchair in a year. I'm not and can even rock out with my IPod.
The big news in my world is we are moving to Korea for 3-5 years. Hubby has always wanted to do this and since he has always let me do whatever my dreams are, I thought, what the heck! The company is putting us up over there paying all expenses.
My RA is in remission but my AP doctor suggested with the move to have the IV antibiotics for 5 days. He has a lot of patients that come in once or twice a year when they feel pain for the IV's and they take no other meds. That way I don't have to take over a ton of Minocin plus I really like the idea of being med free.
I'm also in psychics and have had a few "professional" readings and I also have a friend who is psychic. They all say we are not going. But all the paperwork has been signed and I'm signing up for Korean lessons. My friend has always been right even when I thought she was crazy so we will see.
I am a little worried about having problems while in Korea but the company would fly me back if I wanted US intervention. They seem to have a good health care system there. I would be about an hour from Seoul.
Becky
Thinkthinn
An experienced AP doc will test you to see if you have the gene for Lupus - in extreme cases people can develop Minocin induced Lupus. Stop the Mino and the Lupus goes away (which is why I think it is really a herxheimer reaction). In cases where people have that they can do doxycycline and I met one person that uses Zithromax. And Zith has no immunomodulating properties. In other words, some people say Mino works like an immunesuppressent and that's why it works - not that it's going after an infection. Yet Zith doesn't have that response - and it works too. Hmmmmm. :-)
Daisy -
Some of the top docs in AP don't believe in the infection connection. Personally, I do. If I'm getting the response I was looking for and my doc thinks it's for another reason - who cares? Know what I mean? LOL At one point I asked one of these Bozo's - "does it matter if it's working as an anti-inflammatory or that it's killing an infection or that I want it to work so bad it works like a placebo. Tell me, how does it matter how it works?" The bonehead didn't answer me. (For those of you not following along with the music - this was the same yucky doc that did a breast exam with my husband in the room when I said I was seeing my OB/Gyn the next day and told him I didn't want one. Creepy.
Clarky -
Where did you see 10 or 12% get spontaneous remissions? On every official site (Arthritis Trust, Foundation etc) I always see the number at 1% get spontaneous remissions. Except for the PRA people. They are the weird ones - they have between a 40 - 50% chance and no other AI disease comes close. If you have any studies I'd love to see them - I'm building a AI 'library'. LOL
JustGotIt -
I've heard that story recently too - from Zeekman - on the not holding out any hope thing. AP is hard to do on your own - and if you can do it without MTX with minimal herxing - go for it! That's what I did (but I lucked out on the herxing thing!) You will be very happy with the results. There have been a ton of posts lately on people using MTX (Go-go?) and weaning off slowly and if that's what it takes, that's what it takes. Get support from other APer's. There are a few of us on this board and there are other boards dedicated to it. Heck, there was a post in the last couple of months about one of the tetracycline drugs are safe during pregnancy (but I'd take the chance on pregnancy induced remission).
Keep bing optimistic! There is a way to beat this thing. We just all have to figure out what our body needs.
Becky -
I know that feeling! 4 Months after diagnosis and I'm on a walker! I kept telling those docs something was driving this but, hey, why listen to me?
Are your numbers actually in remission! How cool! That's my goal. My numbers were sky high and I think they didn't drop much with all the stress of the move (and eating junk on the road isn't helping!). I soooo want to do the IV's but hear thru the grapevine my AP doc is not into it. We'll see. :-)
Don't worry - if you need help they'll fly you here! You will be fine! And you don't have to be psychic to know that. :-)
Pip
Hi, just wanted to say welcome!
Welcome!
Did you test for Lyme? What makes you suspect you had it? That's one hard bugger to a) test for and b) beat, according to the Lymies I've seen post. Did you get the Igenex test? Which med for the IV's? Was it the standard 2 week course?
AP is a long term antibiotic course. A couple of weeks will do nothing and many people report feeling worse. Many people report it takes up to 6 months to see an improvement and for some it can take 2 years. I was lucky to be an early responder but I think it's because I was never on the standard meds. The thing with AP is when it kicks in you get off all the other meds, the painkillers, etc.
Pip