anyone here fail AP? | Arthritis Information

Just a thought.

Sorry all...I just noticed that the link I posted to the Discover article only shows the title and first little bit of the article...don't know what happened to the rest.  (...at least on my computer).  Too bad, it was very interesting.  It pointed out that one of the risks of long term antibiotic use is that it continuously disrupts the bodies natural symbiotic relationship with bacteria that are very important to the way our body functions.  It also talked about how bacteria colonies compete for space and antibiotics can kill off benign bacteria colonies leaving less competition for more agressive and harmful bacteria to flourish.  Definitely food for thought.  I still think that the long term risk of antibiotic therapy is not well understood.  I'm certainly not saying that it is riskier than other medications like the biologics...but I'm not sure it's any safer.

Alan

I tried it for four months and no help. I started having major flares in joints that originally never bothered me. My dr suggested humira .....I had already fail several other meds and I wasn't gonna mess around so I tried the Humira. It was working well. I had 4 shots...Last one Jan. 5 and then got a cyst and had to go off for surgery. Still off while healing. My Uncle Arthur has been in full swing all the while. (RA)

Good luck with whatever you decide.

CinDee

Phatgirl!

I'm an AP'er and I LOVE it.  Within a month most of my pain was gone and I could open a jug of milk again.  Over the next 6 months I got better and better (still tired as heck but I'm in a middle of a move and my hubby thinks its that).  I'm the AP poster child of how well this can work - if you luck out - and I did.  Most people do NOT luck out and it is said that you have to be on the meds 2 years to see if it is working.

Most people take AP on faith and hope and pray that it works.  They hang around with other APer's so when things aren't working right they can get guidance from others that have been down that same road.  They adjust their doses and their diets and whatever to MAKE this work.  Because either they do not want to take the regular RA drugs (me) or the regular RA drugs quit working for them and they have very little other options. 

From hanging out at www.roadback.org I've noticed a pattern to the AP journey.  They'll start AP, do good for a couple of weeks and get knocked on their butts - that's the beasties fighting back IMHO.  There is almost always a herx reaction that's big around month 3 (sounds like Cindee to me - sorry).  They continue to improve until they usually say they 'turned the corner' around month 6.  At a year they will say they are 90 - 95% better.  Those who did not take enough probiotics or systemic antifungals start getting ill again around month 18.  They can get worse and worse if they do not address these issues HARD AND FAST.  Of the people that make it to year 6-7 a small percentage need to rotate their ABX so that the beasties do not become resistant to the ABX.  Those of us intending to do AP will rotate our ABX to be on the safe side. 

Bonny is right - while in theory you should be off all regular meds - that can be crazy and you may need to wean them to get some sort of relief until you know it's working.  If you are persistant and patient you can get there.

Alan, there is a ton of new research showing many long term benefits to Antibiotics - including a seriously decreased chance of heart disease.  The tetracycline family ABX has been shown to stop colon and liver cancer in it's tracks.  It works on the supposedly incurable periodontal disease.  And to make it even better - I have wonderful skin now - no acne!

Would you be so kind as to copy and paste the article you posted that the link does not work for and post it here?  Who cares that it's long.  I'd like to read that for myself - but from your explanation it sounds like they are referring to the beneficial gut flora that are also killed on AP.  Since research has shown again and again that AI diseases 'start in the gut' - those of us with AI diseases PROBABLY have hyperpermeable gut linings that allow partially digested food molecules and toxins to enter the bloodstream instead of being expelled from the body.  Any hope for long term AP remission/cure needs to address those issues for a chance for success.  That is why even tho many AP docs do not say to take probiotics - we do - at 3 - 4 times the recommended dosage. 

I hope this is coming off friendly and pro-AP!  I'm slammed for time and have to go back to boxing stuff up. 

Pip

Pip!

Thanks for the input.  It sounds like you really have to be committed to make this work and that it may take quite some time.  I'm not sure I'm willing to feel that bad for that long to see if something "might" work.  It sounds great in theory, or for those who are lucky.  I feel bad enough on all these cruddy meds...of course, which is worse, meds or the disease?  Sometimes I wonder.  Anyhoo, thanks for another perspective and I'm glad it is working for you!

Phatgirl

I'd say the answer to AP or not AP should be determined on whether or not you think an infection triggered your disease.  If you suspect that at all - delaying AP and suppressing your immune system is probably the worst thing you could be doing.  The regular meds suppress your body's response to an infection.  But the infection is still there and growing and making more colonies in different organs and systems.  I think this is why we get so many multiple diagnoses - RA, thyroid, CFS, etc.  The microbes are still there and still reproducing.  I've noticed that RA'ers and AI disease people hang out on multiple boards.  I suggest making a stop on some of the AP sites.  There you'll see others struggling with beating this disease - and winning.  Hope...floats!

Pip

Ahhhh - herxing.  The idea scared me to death, to be honest.  I just figured I knew what started this (abscessed tooth and stress) and that I had to ride it out to get better long term.  There have been a ton of posts on the RB lately about maintaining on the regular meds and weaning off as AP kicks in. 

No pressure - just listen and learn.  I really feel AP saved my life - and if I could ever get finished packing I could actually START that life!

Pip

Thanks for sharing that article.  Very interesting.  My rheumy said I can start on AP therapy in April.  I am hoping that it will work for me as I don't want to go to the stronger drugs.  I am on plaquenil right now.  She wants to keep me on the plaquenil and add minocycline. 

I was on omnicef (an antibiotic) a few weeks ago and had about 5 pain free days.  I forgot what it felt like to have no pain! I am hoping that means the ap therapy will help me!  Time will tell...

I just wanted to let you know that those of us on AP having erosions etc. stay on our regular RA meds until the AP has taken over working.  One does not have to drop all other meds in order to try AP.  In my case if AP worked after I was crippled by RA what good would that do so my Dr. has me on RA meds to try to slow the progression and AP.  I figure if AP works that's great and if it doesn't it won't have costed me precious time.

Just a thought.

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I am wondering why more docs don't try AP along with RA dmard drugs for new patients. Why aren't the perscribing AP along with plaquinel for someone who has had symptoms less than a year. Especially if they had some kind of infection prior to the onset of RA. So many of us had a dental disaster just before RA reared its ugly head. 

Laura - If you felt better on the Omnicef you have a great chance for the AP to work quickly for you!

Marian - That is the ,000 question.  Minocin is listed as a DMARD by the Arthritis Foundation.  I wonder if it might have anything to do with the difference in price of Minocin vs Enbrel/ Humira etc. 

I just ordered the book The New Arthritis Breakthrough.  I am anxious for it to arrive. 

Bonny~I sure hope you are right and the AP works quickly for me. 

I asked my RD about using minocycline at my Feb. appt.  I have been on plaquenil for 3 months.  She wants me to continue for 2 more months.  If I still have pain then I can add the minocycline to the plaquenil.  I was so nervous about asking her about AP therapy because of all the things I read how doctors are reluctant to use it.  She said I use it alot.  She has several patients with success on it.  I was flying high when I left there knowing that it is now an option for me!

Thanks for all the info.  I read everything I can get my hands on!

Hey all;

I've read in a couple of places that plaquenil is an anti-malarial (parasite) and gold is an anti-microbial.  Hmmmmm.

Laura - even if you have no pain - I'd still do AP.  That's the only treatment out there even hinting that it's trying to get to the cause.  And even if it's a bumpy ride back to health - just remember it's two steps forward and one step back.  I just got hit today (pneumonia) - oh well - I'll beat this thing yet!

Pip

The onset of my RA was stress so maybe that is why AP didn't work for me. I never even heard about herxing until I read about it on here. You would think my doc would have brought that up. hmmmmmm

I'm glad AP is working for some of you but like I said before, I didn't want to waste anymore time because my RA was really aggressive.

Good luck & good health!

CinDee