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Its been interesting reading. I know the ACR has been working on this for a while..and there are quite a few changes from the previous document. AP people aren't going to like the fact the minocylcine was recommended only in early mild onset..as an equivalent to plaquenil and not recommended in multiple usewhew! Alot of pages printed out! Later tonight I will read them.You are right Buckeye - this APer is ...PO'ed. You know what...I've been thinking about the need for a study on severe refractory arthritis and AP. I mean, if everything else failed, and they haven't tried it...what's to stop them then?
I'm going to send a suggestion to the Roadback and then go talk to my AP doc. He's got to know somebody, if not himself, willing to work on 'case studies'. Maybe if enough case studies were done then the ARC would do a double blind study.
AP totally needs the studys to support the claims. You know I've said that before. You are dealing with scientists and they want to see things in black and white.
The ACR does not performs studies themselves. The studies are performed by researchers, doctors usually in conjunction with teaching hospitals but not always. But your AP doctor is a place to start. but until the studies are performed it will never gain acceptance for anything but mild RA because the existing studies don't back it up for any other use. Your real proof will be if someone ever definitivly finds a single infectious cause that is verifiable in all RA cases. You got to get the science behind you not just anecdotes
Except its multiple types of mycoplasma which kind of determine which flavor of 'RA' you get. So far, it's m. fermantis (spelling) m. hominis (spelling) c. pneumonia and strep. as the big 4 and why certain antibiotic work better than others depending on which bugger it is.
I think this idea will work. The NIH ran that MIRA study only after the RB got to the politicians because there were all these case studies and agitating APers. And even tho it was designed to fail - it passed with flying colors.
Let's see what us APers can do this time around.
ok so there are different flavors..the studies still have to show a cause and effect between the bugs and RA as the sole cause of RA. You would think AP doctors would be working on this already since this is seperate from a treatment protocal. This is the stuff Nobels are made of and we certainly vindicate their belief. You prove the infectious cause then the treatment half is a no brainerThanks for posting...excellent information.
You'd think so, wouldn't you.
So, how come 25 years after Marshall won the Nobel for h. pylori, still only 46% or GI docs prescribe antibiotics for ulcers?
Change is only going to come from the patients on up. Trickle down doesn't work. It didn't work in Reagans Trickle Down VooDoo economics and its not going to work in medicine. All we can hope for is for a few 'case studies' to be posted and then more patients willing to 'take the risk' and when as they get better, they get more people, newly diagnosed or not, and they get more people and they get more people and eventually we become a groundswell.
Pip who is going off to write some letters.
Marshall won the Nobel Prize in 2005 though his studies did take place in the '80's. Can you cite your 46% stat?
Change in the medical world when it comes to treatments almost never come from patients. You want full mainstream you gotta do the full range of studies that the other meds go through. AP can not continue to rely on anectdotes if it wants to gain acceptance for wider use. It has to go through the same vetting for RA treatment as any other med. You get the studies and you'll move it up the food chain
if some one was really interested in doing the studies there are plenty of non profit health foundations ready to provide the funding especially if it would find a more cost effective way to treat an expensive diseaseYou find me one willing to consider it and I'll become a non-profit and get a proposal together.
Bacteria That Causes Ulcers Travels In Blood System To Cause Other Diseases
October 27, 2006 5:43 p.m. EST
Linda Young - All Headline News Staff Writer
Umea, Sweden (AHN) - People who suffer from atherosclerosis and rheumatoid arthritis might blame it on their ulcer.
Researchers from the Uniformed Services University of the Health Sciences (USU) working with European researchers found that the peptic ulcer bacterium Helicobacter pylori (H. pylori) can reach blood circulation.
That allows the bacterium to travel throughout the body and it might cause not only atherosclerosis and rheumatoid arthritis but other chronic inflammatory conditions of unknown origin, Newswise reported Friday.
An article describing the groups findings will appear in the October issue of the PLoS Pathogens Journal. The researchers included: Andre Dubois, M.D., Ph.D., professor of medicine, surgery, and emerging infectious diseases, and chief, Laboratory of Gastrointestinal and Liver Studies at USU, Drs. Cristina Semino-Mora and Hui Liu, Dr. Thomas Boren, who is professor of biochemistry and biophysics at Umea University.
Dubois' latest observations build on a 1980s landmark study by the 2005 Nobel laureates Barry Marshall and Robin Warren of Australia. They were the first to show that H. pylori bacteria causes gastritis, peptic ulcers and stomach cancer, one of the most common types of cancer worldwide.
Buckeye - what do you see when you read that H pylori article? Do you see the same thing I do? The resistance to a set way of doing things by medicine in general? We don't have a chance IMHO unless it's the patients that demand the research.
Pip
Pip,
science always moves slowly and yeah sometimes it takes a new generation before something becomes common place. They have to see proof and then see it again..actually the acceptacne of H Pylori went fairly quickly. Its easier when you are dealing with procedures vs microorganisms because you can see the procedures with your own eyes. You have to show the doctors WHY what they are seeing in the practices may have more to it. And it all goes back to studies..verifiable studies
We woudn't have ANY studies if it weren't for the RB and MIRA. We just need to do that again. Only this time on severe.
Pip
My favorite part of this was the circles and arrows. A treatment flow chart. Do you think they keep one folded up in their pocket, and refer to it?
Patient: Would it be possible to start with minocycline? I'm a little anxious about some of the meds I'm unfamiliar with, and that is drug I've taken before when I was a teenager. It didn't do anything for my acne, though.
Doctor, whipping out the flow chart: Unfortunately, no. You see, we start here at the top and as we move through the chart, you end up here. I'm sorry, but that is what the chart says.
Patient: I can't just try it until the next visit? It will take weeks for my insurance to approve Enbrel anyway.
Doctor: No. We have a chart now. With circles and arrows. It says you need Enbrel, not minocycline.
Did I say the circles and arrows were my favorite part? Excuse me, that is incorrect. My favorite part is on page 771, and it wouldn't copy for some reason, so you will just have to believe me. It says they do not recommend combo biologic therapy due to the higher rate of adverse events and/or lack of additive efficacy.
I saw a study recently with a similar conclusion, but let that slide as just another clinical trial. (The conclusion was more strongly worded than what is on page 771, too.) But here it is, in their 2008 Recommendations. June 2008.
In Oct. 2007, I was told that my then four yr. old daughter needed to be on Enbrel AND Humira. I almost fell out of my chair. I mean that literally, not figuratively, as all the doctors in the room laughed at me.
So now flash forward to June, and they don't think it is a good idea for anybody. Like I was thinking back in Oct., when they were laughing at me. And my daughter was dancing around the room.
It takes money to do the studies and drug companies pay off the Congress, FDA and docs. Melody Peterson said she tried to talk to a rheumatologist to ask questions about Vioxx and Celebrex from a doc not being paid by them and was told THEY ARE ALL PAID BY THEM.
We need to quit drug companies from paying off people in power.
Jan
studies that i'm referring to will not come the pharmaceutical companies but from the academic world and the funding is avialbale through non profit groups.
Pip- Im kind of suprised you are so focused only on the drug...its the infectious theory that needs to be tested otherwise you'll win the battle but lose the war. You want to prove that your "critters" cause RA but if you focus solely on the med then the same old argument(anti inflammatory vs anti bacterial) will ensue. And frankly it would be a more interesting study for the resaerchers to pursue. I'm not saying don't go after minocycline studies but you have to prove the whole hog
[QUOTE=buckeye]
I'm not saying don't go after minocycline studies but you have to prove the whole hog
[/QUOTE]
I agree. Proving the whole hog would guarantee a cure.
OK, so I take a PHARMA CEO hostage and jab him with a syringe of my plasma? Think that would work?
Seriously, there are a lot of studies out there that all seem to say 'infection' then end with 'more investigation is needed to verify this'. Duh! Doesn't anybody want to climb out on that limb and say it's that? I saw something about a month ago that was astounding...let me see if I can find it for you.
Hugs,
Pip
Pharm is not researching for cures as you well know they are building treatments based on academic reseach.
Ultimately an infectious study will have to be large scale, and include finding accurate testing. If I recall correctly the anti-ccp study ended up with like 30,000 people. You can't prove an infectious cause until you have a large representative sample
Melody Peterson says that drug companies get favorable studies published and unfavorable studies are not published. Academia is not so free of drug company control.
Jan
those are generally from my reading studies sponsered by the pharm companies not by outside organizations
its got to start somewhere...and as recent history shows those unfavorable studies eventually get out....you can remain cynical and not do anything or take a leap of faith
bumping for jsnm
tanks ! If anyone does not believe that the Pharm companies do not rule the FDA and Congress and Academia, you're delusional. It is ALL about profits and very little else.
It would be very nice and cosy and lovely to think otherwise, or to believe otherwise, but we all know that it ain't so.
Drugs in the pipeline that are shown not to generate enough profit are routinely killed.
I used to work for one of the big ones as a rep and we paid the doctors well for their troubles. We bought data from the pharmacies which showed us which docs were prescribing which meds. We'd reward the docs that prescribed our stuff and woo the ones who prescribed our competitors stuff. A RD who prescribed MIN would be very motivated to start prescribing a high-profit biologic. There would be all sorts of incentives, financial and otherwise....
Keep in mind the same company that makes MTX also makes Enbrel - clearly Enbrel makes more money for them. I suspect that the Enbrel's and Humiras of the world will soon be in the same boat as Vioxx. Not because the companies "hid" the problems (as they did with Vioxx) but because not enough research was done and the side-effects will become far too prevalent to discount.
This disorder is a beast, we all know that. I strongly believe that there is a cure and it's within our reach, my personal opinion is that it must lie with antibiotics, antivirals, diet, lifestyle and conselling. I personally believe that there is a strong psychological component to the disease - although I could be dead wrong, it's just my gut feel. Everyone is entitled to their own opinion...Having had RA for 9 years, I've used most of these meds. I've never had any serious side effects with any of them except for Humira and that was allergy related.(Which, by the way happens in less than one percent of Humira users)
I am now using Rituxan and for the first time in years, my labs are near normal and no radiologigal progression has taken place. People make choices and weigh the risks/benfits of the meds they use. I read, ask questions and make decisions based on what I think will work best for me. I assume everyone else does too....
As for there being a strong psychological component to RA, that may be true for you, but it certainly isn't true for me. I was a healthy, happy person before being diagnosed with RA. I'm still a very happy, positive and healthy person now, other than having RA.
Lynn492008-06-19 07:48:17Why do you keep editing your post? Can't get the last word in fast enough?
Whatever, dude.No sinister motive here, I'm just not a great speller. Nothing personal, though you obviously took it that way........Each time you edited your message you argued something else that I wrote.
Your first post was just "Everyone is entitled to their own opinion....."
You then added the rest of the 1st paragraph and the 2nd paragraph.
Then you edited again to add how very happy and well adjusted and psychologically sound you are.
I actually didn't see you correct any spelling mistakes. So at least be honest about it.
I didn't take it personally at all, I just found it interesting.Maybe you need to look a bit more carefully....I corrected several.
Lynn492008-06-19 08:17:12Ever since I switched to Firefox as my browser, all my misspellings get underlined here for me! It's great! So now my only troubles are leaving out words.
Suzanne2008-06-19 08:20:27That would be helpful for me. I also have a tendency to leave out words, just the little ones though :)Wow cdn, I have to say I'm impressed with your attention to detail. My brain doesn't hold on to other's typos long enough to notice later whether they went back and fixed them.LOL Linncn. Hmmm...must be part of that....psychological component for some of us RArsActually, NikkiLynn, you have a history at AF of editing threads that ended up exploding because of some garbage you posted then you delete the 'offensive' part and you always look 'clean' to the casual reader. Good catch Cdndream.
Also, Cndream, unlike Nikkilynn here, pretty much the rest of the posters on AI can point to some sort of emotional trauma right before the onset of these disease. Some off the wall stress, something of that nature. If I had to hazard a guess, I'd say 85 to 90% of people post so. You might consider researching some combination of 'AI onset, emotion(al), trauma' etc in Google. At one time I had a lot of research but, alas, as my filing cabinet is being redone - I can't find it right now.
Hugs,
Pip
Edited for an elipse
Pip!2008-06-19 18:57:02I have no idea what you are talking about. Careful there, your claws are showing..........HI,
Permit me to jump in here with a comment relative to RA having a possible psychological component. This is from my own personal experience and is strictly anecdotal.
In 1997, I experienced a very frightening psychological trauma. Shortly thereafter, I began to experience physical symptoms which became serious enough to route me to an endocrinologist who, after thyroid testing, Dx'd me with thyrotoxicosis, aka, Grave's Disease. This is an autoimmune disease. I opted to try the oral medication as opposed to ablation and after one year, entered remission. I am euthyroid to this day. During one visit to the doc, we began to discuss the psychological components of autoimmune disorders and he stated that when he was in medical school, he was taught that long periods of extended fright can trigger these disorders. He further stated that medical textbooks going back 100 years list fright as a frank cause of autoimmune diseases.
Fast forward to 2006, December, when I became quite ill with respiratory symptoms, rapid weight loss, etc., and was scared silly that I might have carcinoma of the lung. So scared, in fact, that it took me weeks to agree to a chest-X and during that time, I was a total basket case. Chest-X was neg. for LC but shortly thereafter, I was Dx'd with inflammatory RA-another autoimmune disease.
Call it coincidence if you like, but I believe that there was definitely some correlation between my periods of pre-disease fright and the onset of these conditions.
K.
and as we know that this board is SOOOOOOOOO representative of the millions of people world wide with RA. Stress can be a componant in RA but to throw out numbers without solid fact behind you is simply grandstanding to make a point. Besides I thought infection caused RA...Dear Buckeye,
I was relating an anecdotal correlatory observation relative to me, personally. Thats all.
K.
Katalina -
Do you see that doc ever again? I'd like a list on specifically fright as part of the onset. That's sort of what happened to me. And I've seen tons of posts that list similar things going on at onset.
Buckeye -
Infection is the cause - but it needs a trigger. Up until that point the body has managed to keep it in check but a steady release of corto-homones give the mycoplasma a feeding frenzy. Tons of info on this in PubMed. Check out the HPA axis and RA or AI disease of choice.
Pip
But Pip, what about all of us who have no history of infection, who have no trigger? I was healthy, physically fit, had no recent infection or illness, and nothing traumatic or even notable going on in my life when I got hit. It seems to me that if infection is really the cause, it would have to be the cause for everyone. [QUOTE=Pip!] Actually, NikkiLynn, you have a history at AF of editing threads that ended up exploding because of some garbage you posted then you delete the 'offensive' part and you always look 'clean' to the casual reader. Good catch Cdndream.
[/QUOTE]
Pip, I never even gave that a thought. My 39 year old sister died two months before the onset of my symptoms. I'm gonna do some more reading on that. [QUOTE=Lynn49] I have no idea what you are talking about. Careful there, your claws are showing..........[/QUOTE]
I have to say, you're the most passive aggressive "Oh, who me, shucks darn golly gee" person I've ever met online.
You write that you're so very very VERY happy and so well well WELL adjusted and as healthy as a horse, and nothing bad ever happens to you emotionally... yet you seem, to a casual observer like me, so very very VERY unhappy and and oh! so vindictive.
I call it like i see it....
You edited your post to me about 5 times and if you did correct a spelling mistake you didn't correct many. And you never owned up to the truth, which is the saddest part... your "spelling mistake editing" really consisted of you adding more & more sh*t about how you're right and I'm wrong. And this is with your first sentence (and original post) being "Everyone is entitled to their own opinion".
If everyone is truly entitled to their own opinion, and you truly believe this, then shut up, listen to your own advice and stop attacking anyone who disagrees with you.
You might even learn something. An open mind is a wonderful thing.
I don't claim to know what causes RA, from what I've read, from my time in the pharmaceutical industry and from talking to doctors and other sufferers... I have my own suspicions. My RD believes that it has an infectious cause, (although he's not an AP-only guy) and that in some people there is a dormant type of thing lingering that gets somehow triggered. Explains why RA comes back in a raging fashion when one goes off the the meds that mask symptoms - the biologics will put you into a remission type of state, which is great, but if you go off of them, not many stay in that remission state.
I really don't care who is right and who is wrong. A cure will probably not be found in our lifetimes. We will have to hope that research continues into the cause of all AI diseases and that something is found for our children and grandchildren.
If Pip believes it has an infectious cause and if she feels she needs to share that information with others, why is it any of anyone else's business? If she "saves" one person, doesnt' that make it worth it?
[QUOTE=Linncn] Wow cdn, I have to say I'm impressed with your attention to detail. My brain doesn't hold on to other's typos long enough to notice later whether they went back and fixed them.[/QUOTE]
Well it was funny, each time my computer refreshed it's screen her post got longer... and longer.... and longer...... And more and more condescending (sp). Kinda hard NOT to notice something like that....."You write that you're so very very VERY happy and so well well WELL adjusted and as healthy as a horse, and nothing bad ever happens to you emotionally... yet you seem, to a casual observer like me, so very very VERY unhappy and and oh! so vindictive."
I'm sorry to disappoint you but your perception skills are sorely lacking. But you seem to be very good at judging people you don't know......I never attacked anyone and you are the one being insulting, not me.
Rituxan is working quite well for me and I'm very close to being in remission. I think it's incredibly short sighted to think that RA is a one sized fits all disease. If you and anybody else wants to believe RA is an infection or has some psychological cause, that's fine with me.
It just doesn't happen to be the case with me or a lot of other RA people that I know. As for the rest of your nastiness, it's really not worth responding too.
Thanks so much. This is incredibly informative.
And, it says I on just the right drugs.
Judy
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