Not trying to start a fight about AP | Arthritis Information
If I wanted to start a fight about AP therapy I could. Again and again and again I say that we are all free to take what ever path we decide to on our jouney to finding relief from this very dangerous and deadly disease.
I take offense to the same people making outrageous statements against anybody and any thing not associated with AP therapy and the roadback organization. Like I keep saying, give us names of the criminal Doctors and where we can find them so that we may have them jailed or so I can send them a copy of the accusations and they can take legal actions against those making such wreckless and slanderous statements such as. All the Doctors are paid off. All the federal protection agencies are paid off. If I seem a little rattled about this, I am, I don't like anybody making allegations without merit. Go ahead, brag constantly about the road you have taken but quit saying that all others are criminal.
When I say that each of us has the freedom to pursue relief as we decide you better be very well educated on your choices or better yet, trust the professionals that have actually gone to school for a very long time to be able to help you, oh and still research. Don't get hijacked by a band of non-professional people that you have no idea of who or what they are. The only thing that you know for a fact is that they are not professionals. A choice where you continue to herx, you also continue to damage your joints. Inflammation and pain equal erosion and joint destruction. Pain pills are not an RA medicine and may take away pain but does not stop the erosion and damage. With todays new RA drugs, most people should be free from the dangers of pain meds. I did my research on AP therapy. Believe me when I say I talked to many health care professionals including Doctors and pharmacists. I researched on the internet. I researched roadback.org. I was very not impressed. I could find nothing about monies and that scares me. I have a very seious problem with the studies that they post. Almost all of them are snipets with no way to read the complete study. Here they are:
No,no, no, no, you have to spend the time to click on each one and read them, it won't take long, seriously. Would you make a decision of life and death on a medicne or therapy after reading these studies, feeble at best and snipet to sway at least. The one study that they do spend some time on is the Harris Poll Report, here it is (I am going to
red some parts that I think are very important): One more thing, they don't even linc to the "complete" reports or studies, that's scary, very scary.
NEW SURVEY REVEALS COMMON, LOW-COST ANTIBIOTIC THERAPY MAY HAVE CONSIDERABLE BENEFITS FOR RHEUMATOID ARTHRITIS PATIENTS, REPORTS ROAD BACK FOUNDATION
Road Back Foundation survey shows substantial improvements in disease, reduction in pain, severity of condition and better quality of life, as reported by rheumatoid arthritis and scleroderma patients.
BOSTON, MA, FEBRUARY 15, 2006 - Results of a landmark survey of nearly 200 respondents with rheumatoid arthritis (RA) or scleroderma, who are currently taking antibiotics to treat their conditions, were released today by the Road Back Foundation, revealing that safe and cost-effective antibiotic therapy can have a clear and dramatic impact on the management of RA and improve patients' quality of life. According to the survey respondents, antibiotic therapy has demonstrated benefits over traditional prescription medications. The study, conducted by Harris Interactive®, was commissioned by the Road Back Foundation, a non-profit organization providing support and education to people suffering from rheumatic diseases including rheumatoid arthritis, a serious and often crippling condition.
"As the survey results suggest, antibiotics such as minocycline, a low-cost and commonly prescribed antibiotic with minimal side-effects, may offer an effective option for the newly diagnosed or a subset of patients who either fail or cannot tolerate conventional medications commonly prescribed for the treatment of rheumatoid arthritis," said Diane Aronson, President, Road Back Foundation. "We know that a growing number of RA and other rheumatic patients are turning to antibiotic therapy to successfully manage their disease. These results suggest that others, too, could possibly benefit from this type of regimen"
Key Findings - Pain Reduction, Improved Quality of Life and Tolerability
Key findings from this survey include the impact of antibiotic therapy versus traditional medications for RA in the overall management of the disease, as well as its effect on pain, quality of life and tolerability.
A total of 452 voluntary respondents with rheumatic conditions completed the online survey (73% from the United States). Nearly 200 respondents had been diagnosed with RA or scleroderma and reported having been treated with antibiotic therapy for one month or more to manage their disease. Nearly nine in ten (89%) patients on antibiotic therapy reported positive improvements in their disease after this treatment; the vast majority (77%) within 6 months of initiating the treatment.
In addition, 82% reported a reduction in pain and 80% found it easier to manage daily routines and activities. 65% reported a reduction in the severity of their condition. More than half (55%) reported that they are taking less medications overall than prior to antibiotic treatment.
Patients on antibiotic therapy who have also taken traditional prescription medication were asked to compare the two types of treatments. They overwhelmingly reported improvements in key markers of the disease including slowed progression of their condition (92% for antibiotic treatment versus 39% for traditional medication); decreased levels of pain (91% antibiotic treatment versus 64% traditional medication); reduced stiffness (92% antibiotic treatment versus 58% traditional medication); and reduced swelling (89% antibiotic treatment versus 58% traditional medication).
Survey respondents also reported improvements from antibiotic therapy as compared to traditional medication in regards to quality of life (94% antibiotic treatment versus 54% traditional medication); increased ability to function at home (94% antibiotic treatment versus 57% traditional medication); and reduced fatigue (93% antibiotic treatment versus 38% traditional medication). For these respondents, 78% also said that antibiotics were more tolerable to take than traditional medications.
"The Road Back Foundation encourages patients to talk with their physician about their treatment, and if appropriate or needed, discuss the potential use of antibiotic therapy in the management of their disease," said David Trentham, M.D., a noted rheumatologist and Associate Professor of Medicine at Harvard Medical School, and Medical Director for the Road Back Foundation. "More research is needed, to add to the growing body of peer-reviewed published data on proven, safe and effective antibiotic therapy in the management of rheumatic conditions." Studies published in such journals as the Annals of Rheumatology, Lancet and Arthritis and Rheumatism, all support the findings that antibiotic therapy can be safe and effective for treating RA.
"These survey results indicate remarkable progress experienced by respondents in the study, following the use of antibiotic therapy," Aronson noted. "This is an important first step in qualifying real-life patient experiences and underscores the need for further research in order to better understand the potential and appropriate use of antibiotics by the broad community of rheumatic patients."
According to the Arthritis Foundation, more than 2.1 million Americans are affected by rheumatoid arthritis, an inflammatory disease that causes pain, stiffness, warmth, redness and swelling, affecting many different joints. There are several factors that may cause or impact diseases such as RA, including possible genetic predisposition, environmental conditions (i.e., a virus or bacteria) and hormonal influences.
While the results from this survey cannot be generalized to all sufferers of rheumatoid arthritis or scleroderma due to the non-randomized nature of data collection, the self-reported data are suggestive of the benefits of antibiotic therapy for many sufferers.
Methodology
Harris Interactive® conducted the online survey on behalf of the Road Back Foundation between October 3 and 21, 2005, among 452 respondents with rheumatic conditions. Eligible respondents, defined as adults aged 18 and over who have been diagnosed with rheumatoid arthritis or scleroderma and who have been on an antibiotic regimen for at least one month, completed a longer survey. Respondents either volunteered to take a survey included as a link on the Road Back Foundation website or other websites that provided information about rheumatoid arthritis and scleroderma, or were sent an invitation via email to participate in the survey. The email list was provided by the Road Back Foundation. Data were not weighted and therefore are only representative of those who were surveyed. This online sample is not a probability sample.
About Harris Interactive®
Harris Interactive Inc. (www.harrisinteractive.com), based in Rochester, New York, is the 13th largest and the fastest-growing market research firm in the world, most widely known for The Harris Poll® and for its pioneering leadership in the online market research industry. Long recognized by its clients for delivering insights that enable confident business decisions, the company blends the science of innovative research with the art of strategic consulting to deliver knowledge that leads to measurable and enduring value. Harris Interactive serves clients worldwide through its United States, Europe (www.harrisinteractive.com/europe) and Asia offices, its wholly-owned subsidiary Novatris in Paris, France (www.novatris.com), and through an independent global network of affiliate market research companies.
The Road Back Foundation (www.roadback.org) is a charitable non-profit association with an international network providing support and education about the application of antibiotic protocols for rheumatic diseases including rheumatoid arthritis and scleroderma.
The Road Back Foundation does not engage in the practice of medicine. Consult with a physician to assess any medical treatment that is being considered. The Road Back Foundation encourages patients and consumers to thoroughly investigate and understand all treatments and medications before proceeding. This material is for educational purposes only.
Red words, May means maybe, even they won't say Can or will. It was a marketing study with respondants, email respondants. I wouldn't put trust in a marketing study for a car especially if it was paid for by the car manufacturer let alone a path for my RA. Just what is traditional medicines? Advil is a traditional medicine. Aleve is a traditional medicine. They won't mention what medicines. I have not seen anything comparing biologics with minocin in any of the studies. You can look at all of their studies, you will see methotrexate, hydrochloquinal but you won't see any comparisons to the new line of defense against RA.
Some many months ago I posted a safety study for I think nine years of safety data about enbrel. It was the actual safety study submitted to the fda. At that time, I didn't know that there was a war with the APers, I just posted the safety studies to put some hope to those of us that take these very serious drugs that can have fatal side effects, that's all. The APers attacked me saying that I had posted a advertisement paid for by the makers of Enbrel. The Enbrel study was complete with-out inuendos and not done by a marketing firm paid for by the makers of enbrel. When I called the APers on their wild allegations and insinuations that the safety study was not to be reliable or honest they all got the "ostritch" disease. A couple even got the "back peddling" disease.
This study and the results is shabby at the least. Many alternative herbals and homeopthics have better studies than this one.
What the Doctor said is the one part of this study that you can take to the RA bank.
The Road Back Foundation encourages patients to talk with their physician about their treatment, and if appropriate or needed, discuss the potential use of antibiotic therapy in the management of their disease," said David Trentham, M.D., a noted rheumatologist and Associate Professor of Medicine at Harvard Medical School, and Medical Director for the Road Back Foundation. "More research is needed, to add to the growing body of peer-reviewed published data on proven, safe and effective antibiotic therapy in the management of rheumatic conditions."
More study is needed. You do need to talk with your healthcare professionals. Healthcare professionals are not criminals. They are not secretly taking money to keep you from antibiotics. There is no great decades old conspiracy to keep people from AP. I used to be smarter than my Doctors back when I was very stupid being so ignorant and following the wrong people. My joints paid the price. It's shameful that someone spends so much time finding the few criminal elements in the professions and agencies and try to convince us that the very small element of criminals is what the complete professions and agencies are made up of. Most get caught and are prosecuted.
Do your homework. Do your research. This is our disease that is in your body. Biologics have an excellant safety record considering that the medicine disrupts the immune system. Methotrexate has an excellant safety record as does prednisone. They all have to be closely monitered. They disrupt our natural function but in so doing allowing us good function. Prednisone is a miracle drug, flat out. It actually keeps patients with organ transplants alive.
If you decide to use antibiotics, good for you. If it works for you then very good for you and if it doesn't work for you, change to something that will, it's that simple. I've spent so much money on alternatives, still not the horse urine, but none the less, lots of others. Talk is cheap, very very cheap. What the roadback medical director said is truthful, the rest of it, you can't cash those checks at the RA bank, there are no funds.
One more thing, if I had posted a study for the drugs that I take like the aforementioned roadback study, the APers would have beat me up and you know what, I would have deserved it. It's just that simple.
LEV
Not bad for a " sheep " Lev....Thanks for that. I have many ?? about AP as well and I think this helps. Ignore the Trolls
6t5,
I asked some questions before and you answered some of the questions but I would still like to know if you still have MS. Will you always have MS. What medicines are you taking now for RA. Can you take medicines for RA if they aren't the tnf blockers such as orencia or rituxin? Thanks..........................................................LEV
Dear Crazy Man,
Again, somebody posts something pro-AP and you go ballistic.
Here's the reason. The RB only posts summaries. It's a stupid policy IMHO. People, if you want the whole study, Google the authors and some key words in the study and you'll hit the Pub Med study.
The one thing they do post is something they paid for. It is not hard science. It's a POLL. It didn't persuade me to try AP. The STUDIES DID.
Notice Lev, that I have never posted this. I think its interesting...but not science.
Now, start looking at the links you so faithfully copied - there are some that compare to biologics. And even one for DMARD resistant.
Don't make me post that Boston Globe article again.
Pip
Gee Pip, Lev almost had me convinced that all those research scientists were making all that stuff up, and you had to go and ruin it.I replied on the other thread. I have not bbeen given a diagnosis yet. Seen 3 Neuros. MS " type " symptoms as I had posted. I take MTX and MedrolQuote from Lev:
Do your homework. Do your research. This is our disease that is in your body. Biologics have an excellant safety record considering that the medicine disrupts the immune system. Methotrexate has an excellant safety record as does prednisone. They all have to be closely monitered. They disrupt our natural function but in so doing allowing us good function. Prednisone is a miracle drug, flat out. It actually keeps patients with organ transplants alive.
Are you friggin kidding me??? Do your homework. You are very very mis informed!!I have the opinion to each their own but thank you for your time that was very interesting have a nice evening.
"Methotrexate has an excellant safety record as does prednisone"
HAHAHAHAHAHA
I just hate to see the newbies come here and read crap like that while they are trying to make important decisions regarding their health and futures. Pred:
http://ibdcrohns.about.com/cs/prescriptiondrugs/p/medprednisone.htm
http://www.buzzle.com/articles/prednisone-side-effects.html
MTX:
http://www.drugs.com/methotrexate.html
http://www.rheumatology.org/public/factsheets/methotrexate.asp
Did you ever read the pamplet that comes with just about any drug frrom the drug store. If you did you would see that many have " risks " and side effects. That said Pred hs helped just about everybody with RA at some point. MTX was the only drug that initially helped meLorster,
This is what you wrote:
"I just hate to see the newbies come here and read crap like that while they are trying to make important decisions regarding their health and futures."
You should have stopped after the word hate, cause that is your problem, you just hate and that's why your life is in turmoil.
Arriscolwell,
Seriously, you are out of your knowledge zone. You are trying to make a point against what I said not for the sake of credible information but to childishly try to discredit what I posted because you don't like me. You should stick to your knowledge zone, you know, hijacking threads and talk about hineys and poo poo and pee pee and throw in some four letter words to show everyone that you are a "grown up". Know what I mean jellybean? It's time to grow up Arriscolwell.
LEV
I would think that the "newbies" can figure out who has credible things to say and who does not by reading new and old posts .
I have learned alot by going to old posts not only for my Ra but also of people that always has mean things to say to others that I feel has meaningful things to say .
As being a newbie here myself (as are many others ) You should do your homework when some one posts something that may help you and not take it as fact .
Most of us are grownups and need to act like it .
All I did was post a few helpful links. :)
So sad that you feel so threatened Levvy dear. :)
All meds have side effects both bad and good. I had good results with metho twice and the third time--not so good. Prednisone makes you feel wonderful and it is a wonder drug but its got a stack of bad side effects also. Biologics have done wonders for people and literally have made their life do a complete 180--for me I got a heart problem from one of them. You just never know.
Everyone's bodies react differently to different meds----you find what works for you---but you have to remember that it might not work for someone else.
why does everyone get so pissy on this website? Wait a minute. I'm not sure if we were all reading the same information here but here is what I read...." Methotrexate has an excellant safety record as does prednisone. " This is the information old Lev spewed out. This is not the truth. These two drugs have helped many, but they are riddled with horrible side effects both short term and long term. These two drugs are taken very seriously in the medical community and there are people who have terrible side effects and long term damage from them. If my 17 year old child got on here looking for information, I would not want them reading that. And by the way Lev. My life is not in turmoil as you seem to think. You know nothing about my life as I choose not to share every moment of it with everyone on the WWW. I don't sit around cold filtering my ty3. I handle my pain much differently than most and that is my business. I'm tired of the way you talk to people on here. Yous remind me of Hannabal Lecter Lev, don't you think you do Lev? Come on Lev, tell me, got it?LOL
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