Calling all Palandromic RAers | Arthritis Information

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Ive had Palandromic RA for over 2 years now. I'm interested in others telling me their stories. When were you diagnosed? What test were positive? Did you progress to full blown RA? Did your symptoms disappear? How often do you have attacks and where do they occur? Are they unilateral or bilateral? Are you on any RA medications?

Me....I was diagnosed 2 years ago. It started with attacks that were unilateral every 3 weeks or so. Knee, hip, hand, shoulder. Now I'm down to an attack (and it's usually my hand and mostly left) every few months. Always lasts 3 days. I was on Mobic but now just take Motrin as needed for the inflammation. My RF was over 650 two years ago and my anti ccp was greater than 250 two years ago. My x rays were negative for any erosion.

Hi Goldie,

 
I was diagnosed with PRA in Nov 07 & after 4 mths of research I decided to use diet & AP therapy as my treatment path.
 
My PRA presents itself as affecting the soft tissue & muscles only not the joints ... but when I was flaring the pain was excruciating, morphine didn't even take the edge off & yes it always lasted 3 full days then it was gone ... In the beginning my RF was zero then after starting treatment it goes up and down like a jack in the box - one minute 5 the next 120 the next back to 10 then up again --- right now it is 260.  As to where the flare hit was strange because it is always transient - it can move from hand to thigh to the other side & back again within the space of 1/2 hr but the pain is always constant at around the 8 to 9-1/2 on the pain 1-10 scale.
 
I suggest you read 'The New Arthritis Breakthrough' by Henry Scammel & have a look at a website called TheRoadBack http://www.rbfbb.org/
 
Since starting AP therapy in Jun 08 I have only had 2 flares & recently after major surgery I have had what I call mini flares lasting no more than a couple of hours.
 
If you want any further information, please feel free to ask.
Maz
 
 
 
 
MAZ you take lots of antibiotics.. Have they been working? How long are you on these for>??
Just for lyme, or to heal gut germs too?
I know I haver RA for sure... But if meds are working... sounds like an answer...

Maz.......I've looked into alternative therapies such as AP. PIP introduced me to that but my Rheumy says that isn't a proven course and refuses to consider it. I live in a small rural community. I was just interested in seeing if others progressed further, stayed the same or it went away.

Thanks for the PM and I have been to that site you recommended when I was first diagnosed. I'm an RN and I'm more into the traditional proven medical treatments vs alternative therapies.

Why would you want to bolster your immune system when your immune system is what is hyperactive and attacking your body??
Hi Jannabelle ..
 
I don't take LOTS of antibiotics -- my abx regime (below) is pulse dosed, meaning I take my abx on Mon Wed & Fri only and every doctor I have seen over this time has said it is such a miniscule amount of abx there is no problems with it.
 
1/4 tablet Rulide & 2-1/2 mls Amoxil Forte syrup in the morning
1    tablet Dalacin C at lunch time, &
1    Ibilex tablet at dinner
 
Most people I know on the RB site use Minocin as the only/main abx they use but my PR Dr (as I call her) is looking to target other bacteria we know is in my system as well as trying to get rid of the mycoplasma bacteria by using a combination of abx  -  ie, we know I have Ricketsia bacteria in my system (from a tick bite 30 yrs ago) which is one level below your Lyme disease (we don't have the same Lyme that you have although it is still known as Lyme) & a couple of others.
 
My own Dr didn't believe this would work, but was astute enough to watch my progress through all this -- he was the one I used to go to when I was flaring & in agony & he was the one who prescribed the pain meds & anti-inflammatories for me; last I saw him (which was last Monday) he was amazed at my progress & is seriously looking into all of this with a view to telling his own patients that it is yet another treatment path they may want to consider --- I think that speaks for itself, don't you?
 
I need to mention that my PR GP didn't actually know if it would help PRA at the time I started on it, because she didn't have any other patients with PRA! but was prepared to give it a try ---
 
I can only tell you my story & how I have done -- I don't remember the last time I needed any more pain meds than panadol which in my case is a big improvement, considering I used to take anti-inflammatories, & bucket loads of panadiene forte, tramadol & endone (morphine) -- I still have current prescriptions for all that but haven't filled them... the scripts are my safety blanket...lol
 
My PRA diet is ok now & is used to not only bolster my immune system but heal 'leaky gut'.
 
I guess that's it for now,
Maz
 
 
Maz-aust2009-10-06 18:25:40Goldie,
 
I understand what you are saying, but to me the traditional way of treating it clearly doesn't work & is not proven either --- so what's the difference??  It is only a theory that the immune system is hyperactive, I don't happen to agree with the theory, which I believe is my perogative.  I am not saying that what I believe is right & you are wrong, I am saying it is all theories, maybe this will work, maybe that will work, maybe its the immune system being hyperactive maybe, maybe, maybe....
 
But, the one thing the entire medical profession all agree on one thing & that is 'We don't know how you get PRA so we actually don't know how to treat it !!'
 
I believe it is up to all of us to do our own research, understand all the treatment paths available to us & make an informed decision as to which one we choose to take.  You chose the traditional path & I chose to use AP & my decision is working for me.   I am not interested in changing anyone's mind about it I just would like people to be aware of AP as yet another treatment that is available to them - from there they can make up their own mind.
 
Cheers,
Maz
PS ::  Perhaps you could share & tell us how you are doing with the traditional pathway you took ???
 
 
Maz-aust2009-10-06 18:20:33I had PRA for about 2 years also. After I gave birth to my first child I developed full blown RA. Have had RA for almost 15 years now. But it is well controlled thanks to Enbrel.[QUOTE=jannabelle2001]I know I haver RA for sure... But if meds are working... sounds like an answer...

[/QUOTE]
 
perhaps it is an answer.
 
but remember this:  PRA patients DO NOT have the destruction, disfiguration and distortion of joints that we can have with RA.  Therefore, they have all the time in the world to wait til an AP protocol works for them..
 
We, RA'ers IMO, do not have that  luxury.
 
 
As usual Babs you have skipped a beat ---
 
This whole thread was from someone who said she was diagnosed with PRA & I answered her ...
 
At the end of the day EVERYONE has to make up their own mind & be on the same page as their treating doctor.  In my view it doesn't matter what you take for what illness/disease as long as you understand all the alternatives available to you & make an informed decision.
 
However it is indisputable that there are a lot of people who have RA, Scleroderma & other AI diseases who are successfully using AP therapy to treat their diseases.
 
 
Maz-aust2009-10-07 16:57:20[QUOTE=hessalina]I had PRA for about 2 years also. After I gave birth to my first child I developed full blown RA. Have had RA for almost 15 years now. But it is well controlled thanks to Enbrel.[/QUOTE]
 
Terrific Hessalina ...  glad to hear you have it under control !!!   Maz-Aust,
 
Just out of curiosity, what beat did Babs skip? Maybe she dances to a different drummer, and you just aren't used to her style? It would seem to make more sense (to me anyway) to advise anyone interested or curious about AP therapy to ask a healthcare professional rather than advertising for roadback where there are no professionals, just a handful that think they are. And one more thing again just out of curiosity, you made this statement:
 
"However it is indisputable that there are a lot of people who have RA, Scleroderma & other AI diseases who are successfully using AP therapy to treat their diseases."
 
Since I'm a "show me the proof"  type person, just how many is a lot and please post the statistics to back up your number. Thanks in advance.
 
LEV
Lev,
 
How I have missed your input .... not!
 
You have made your feelings crystal clear many times in the past & that is that 'you' do not agree with AP Therapy & have actually gone out of your way bring it & anyone who is interested in it into disrepute so I am amused that you even bothered to read this thread.
 
If everyone only directed their questions to healthcare professionals a 'forum' like this one wouldn't even exist ... would it!
  
Whether you like Lev or not, he has raised several valid points.
I forgot to add this bit to my previous reply:
 
If anyone actually does want to find out more about AP Therapy please feel free to join the RoadBack website, they have contact lists of specialists & doctors who actually use AP therapy as one of the methods of treatment they use to control RA & many other AI diseases. 
 
If AP was such a bogus treatment as you suggest it is ::: why would renowned specialists give their name to the website & more importantly why would they choose to use that treatment path for some of their patients ...  seems to me to be a strange thing to do ... medical experts in the field of rheumatology actually using AP Therapy as a treatment for RA & other AI diseases, very odd if it is bogus don't you think!
 
 
 
 
Maz-aust2009-10-07 20:56:23Couldn't help yourself Jas ...
Please enlighten me, what valid points --- this is a PRA thread !! 
[QUOTE=Maz-aust]As usual Babs you have skipped a beat ---
 
This whole thread was from someone who said she was diagnosed with PRA & I answered her ...
 
At the end of the day EVERYONE has to make up their own mind & be on the same page as their treating doctor.  In my view it doesn't matter what you take for what illness/disease as long as you understand all the alternatives available to you & make an informed decision.
 
However it is indisputable that there are a lot of people who have RA, Scleroderma & other AI diseases who are successfully using AP therapy to treat their diseases.
 
 
[/QUOTE]
I don't think Babs "skipped a beat."  She was merely informing people that PRA and RA are very different diseases.
 
I agree with you that everyone has to make up their own mind about how to treat their illness but to do so, they need to have ALL the facts and in my opinion, that is what Babs was trying to provide..............
I am a fact of AP....I was on biologics but stopped taking them, as nothing else worked i started AP...i have had a great summer, with little or no pain to speak of, i have loads more energy, the last day or two havent been as good but its the good with the bad....
 
(Lev diagnosed me with STD'S..........
 
Like any disease you have to try meds to know if they are going to work...after years of trying and being allergic to most  i am happy..
 
Maz-Aust,
 
I am not anti-AP therapy. I am however anti-roadback. The reason being is that they post snippets that are intended to misguide the sick. Anything is allowed to be posted as truth whether true or not as long as it is pro-AP. Anything is allowed to be posted as truth against traditional medicines whether true or not. There can be no debate or the showing of the truth about what they try to post as medical science, it's not allowed. In their (roadback.org) disclaimer they say flat out that they do not endorse any therapy and that they suggest that you contact a healthcare professional concerning. Here it is:
 
"Individuals should consult with their physician regarding any protocol that they are considering. RBF does not endorse any specific products, treatments or protocols and is not affiliated with any other website or support forum. The personal opinions expressed on this forum do not necessarily reflect those of the Foundation."
 
See how smart they are? They will not make such wild statements as you will because they know that they would be bombarded by lawsuits. They say " Individuals should consult with their physician regarding any protocol that they are considering." Yet, all the people at the website refer all visitors to contact read this and read that. You will neverread anyone suggest that the newbie "consult with their physician regarding any protocol that they are considering." I actually (unlike you) suggested what the legal roadback.org suggested. What's your problem with that? That's what you should be saying. Talk to a healthcare professional that has actually gone to school to be a professional? Does that make sense to you? See, anyone that follows your unprofessional advise and destroys their health can't sue you. But roadback knows better but yet allows people like you act like a healthcare provider, make outragous statements that can't be backed up by science or medical fact and they (roadback.org) are completely free from legal ramifications. "The personal opinions expressed on this forum do not necessarily reflect those of the Foundation." That includes your opinion, Maz-Aust.  You said this:
 
"If everyone only directed their questions to healthcare professionals a 'forum' like this one wouldn't even exist ... would it!"
 
This forum would exist but the roadback wouldn't. At this forum, if you post something as medical fact, there is a good chance that you will be expected to prove it. At the roadback, you need no proof, nothing. And very seldom will you ever read anyone give advise like "we suggest you speak to a healthcare professional, even if the poster is complaing of extreme pain or other medical complaint. they are told they are herxing, or not following protocol or should stop milk or wheat or beef or read this or read that. Yeast is running rampant. Not just inside, but outside also. Yous are damaging not just your inside "good bacteria" but also your outside "good bacteria. And now more and more, flagyl has been added to the coctail to try to control the good bacteria "kill-off" and more and more c-diff complaints. And c-diff is extremely dangerous and contagious. Look at how many of the posts at roadback concern yeast infection, inside and outside. The yeast actually growing on the outside of the body. How much longer before the yeast is absolutely anti-biotic resistant?
 
Pincusion,
 
Don't get me started. You would think that you would have learned to just leave me alone but hey, some diseases do destroy the brain and thought process. Prove this, "show me the proof kind of gal".
 
[QUOTE=Maz-aust]As usual Babs you have skipped a beat ---
 
This whole thread was from someone who said she was diagnosed with PRA & I answered her ...
 
At the end of the day EVERYONE has to make up their own mind & be on the same page as their treating doctor.  In my view it doesn't matter what you take for what illness/disease as long as you understand all the alternatives available to you & make an informed decision.
 
However it is indisputable that there are a lot of people who have RA, Scleroderma & other AI diseases who are successfully using AP therapy to treat their diseases.
 
 
[/QUOTE]
 
oh  I beat just fine, Maz.
 
IT IS my DUTY and pledge to not allow someone with destructive RA to be led down the AP trail withOUT making sure they understand the MAJOR differences between PRA and RA.. ergo DESTRUCTION.
 
beat that.
EXCELLENT POST, LEV.  This entire argument is stupid.   Before biologics came along, all doctors had to treat RA was medicines borrowed from other diseases, and prednisone.  Why should anyone trust a doctor who can't even tell them what CAUSES the disease?  Until they can do that, a rheumies opinion is no more valid than someone posting something on the internet, including on the roadback site.    [QUOTE=Joe M]This entire argument is stupid.   Before biologics came along, all doctors had to treat RA was medicines borrowed from other diseases, and prednisone.  Why should anyone trust a doctor who can't even tell them what CAUSES the disease?  Until they can do that, a rheumies opinion is no more valid than someone posting something on the internet, including on the roadback site.    [/QUOTE]

I think this is my biggest problem with The Road Back.  There is a pervasive attitude there that they hold all the answers.  They know the cause, they know the cure.  Very rarely does someone step up and question anything, even when the claims are outrageous.

I'll stick with my medical team's advice. [QUOTE=Maz-aust]Couldn't help yourself Jas ...
Absolutely right Joe,
The argument is stupid --- NO-ONE knows why people develop RA, PRA & many other AI diseases so I agree that the doctor's opinion is just that 'an opinion', just as their choice of treatment is also a 'maybe this might work' : 'we believe this may help' : NOT this will work!
 
Lev,
What can I say - you are such an expert.  BTW what exactly are your qualifications ???
 
Jas,
The issue is not RA v/s PRA it is a PRA thread with a PRA/AP question, I answered the question from my point of view --- no one was leading anyone up the garden path!
 
Babs,
Wow!! & what a statement .... "IT IS my DUTY and pledge to not allow someone with destructive RA to be led down the AP trail withOUT making sure they understand the MAJOR differences between PRA and RA.. ergo DESTRUCTION.  you really are full of yourself aren't you.  The first thing you should remember is that adults are all perfectly capable of making their own decisions --  For you to say you will not allow someone to be led down whatever path is really not your call ...
 
 
To everyone:
I have said this before, many times, & will say it once more, 
IN MY VIEW, IT IS UP TO EVERYONE TO RESEARCH THEIR DISEASE & ALL THE TREATMENT PATHS AVAILABLE TO THEM THEN MAKE THEIR OWN DECISIONS & BE PROACTIVE IN CHOOSING WHAT TREATMENT PATH THEY WANT TO GO DOWN (with the help of their medical professionals)
 
I think that is fairly clear .... !! 
 
To suggest that the RB site is bogus & has lots of misinformation is also a huge assumption, but what makes AI any better or different ??? 
Maz-aust2009-10-08 17:00:22[QUOTE=Maz-aust]
 
To everyone:
I have said this before, many times, & will say it once more, 
IN MY VIEW, IT IS UP TO EVERYONE TO RESEARCH THEIR DISEASE & ALL THE TREATMENT PATHS AVAILABLE TO THEM THEN MAKE THEIR OWN DECISIONS & BE PROACTIVE IN CHOOSING WHAT TREATMENT PATH THEY WANT TO GO DOWN (with the help of their medical professionals)
 
[/QUOTE]
Maz-Aust,
 
I'm not sure I know exactly what you are asking.
Lev,
What can I say - you are such an expert.  BTW what exactly are your qualifications ???
 
Warning: This may seem quite boring to most RA sufferers
 
My qualifications are that for over three years I have aggressive severe rheumatoid arthritis, complicated with COPD, and the loss of thirty percent of my left lung with-in a few months of my RA diagnosis. I have bone and/or joint damage in my wrists, elbows, fingers, knees, toes and ankles. Not destroyed, but damage none the less, probably no more running or jumping or heavy climbing. Can ya feel me sista? Of course you can't. I researched this disease and medications including AP therapy. I was quite impressed with the roadback organization at first glance. I actually asked one of my rheumatologist, Doctor Richards about AP therapy. He told me that he does indeed prescribe it for some of his mild ra patients but that it wouldn't work for my condition. Well, I went back to the roadback and dug deeper and that's when I found out that they are cultlike and very misleading and in my opinion, criminal. Do you think that I just happened on the truth about that fake harris poll? Do you think that I just stumbled on the actual facts of the corrupt mira trial. Do you think that i just stumbled on the truth about the other studies that they post snippets to? Nope, I am actually a sufferer that does what you lamely suggest, "do your own research". I'm a researcher, not a blind follower. The only reason roadback is still going is because people don't do the in depth research, they just believe people with absolutely no medical training or schooling, believing that they wouldn't lead them to more misery. I think this quote from Joe M and applauded by you shows just how dangerous the roadback and their followers like you and Joe M really are.
 
Absolutely right Joe,
The argument is stupid --- NO-ONE knows why people develop RA, PRA & many other AI diseases so I agree that the doctor's opinion is just that 'an opinion', just as their choice of treatment is also a 'maybe this might work' : 'we believe this may help' : NOT this will work!
 
A doctor's opinion is just an opinion? Maybe, but he has gone to school giving weight to even an opinion.
doctor's degree
–noun
1. any of several academic degrees of the highest rank, as the Ph.D. or Ed.D., awarded by universities and some colleges for completing advanced work in graduate school or a professional school.
2. an honorary degree conferring the title of doctor upon the recipient, as with the LL.D. degree.
3. a degree awarded to a graduate of a school of medicine, dentistry, or veterinary science.
 
Then what the hell is your and Joe's opinion? Oh yeah, roadback degrees. Well heck yeah, that's got to trump a doctorate.Yous are idiots, with idiots degrees, no offense, but what else can you call people that agree with the statement from Joe m that you quoted and agree with?
 

Main Entry: id·i·ot < =au title="Listen to the pronunciation of idiot" ="return au'idiot001', 'idiot';" = itxt="1">
Pronunciation: \ˈi-dē-ət\
Function: noun
Etymology: Middle English, from Anglo-French ydiote, from Latin idiota ignorant person, from Greek idiōtēs one in a private station, layman, ignorant person, from idios one's own, private; Date: 14th century

1usually offensive : a person affected with extreme mental retardation
2 : a foolish or stupid person

idiot adjective
[Middle English, ignorant person, from Old French idiote, from Latin idiōta, from Greek idiōtēs, private person, layman, from idios, own, private; see s(w)e- in Indo-European roots.]

levlarry2009-10-08 18:59:31Wow, I just love grumpy people! Are you all having a bad day?WELL DONE LEV,
 
AS ALWAYS IT DOESN'T TAKE YOU LONG TO SHOW YOUR TRUE COLOURS !!!
 
 
I apologise mom of 2, it isn't me, it is just that no matter what I say Lev continues to try to discredit me, he just doesn't like me...
 
I am not the slightest bit grumpy, but I stand by what I said.
 
EVERYONE SHOULD BE PROACTIVE IN BOTH KNOWLEDGE ABOUT THEIR ILLNESS & ANY AND ALL TREATMENT PATHS THEY HAVE AVAILABLE TO THEM, AND THEN MAKE AN INFORMED CHOICE ABOUT WHAT TREATMENT PATH THEY WOULD PREFER TO TAKE, WITH THE FULL SUPPORT OF THEIR MEDICAL TEAM.
 
I chose AP, it was available to me as a treatment option.  I made this choice before even knowing the RoadBack website existed & certainly before I read the book by Henry Scammel .... I made this choice with the full support of my medical team.   
 
The RoadBack website is a 'forum' where support can be shown & given to members who are choosing to use AP therapy as their treatment of choice ... no more, no less.   Pretty much the same as this forum.
 
If AP is not available to you, it's not available to you; if it is an option for you the least you could do is learn all about it before you blindly say yes. 
 
There is no fool proof treatment available for any of these diseases if there was we would all be using the same things.
Maz-aust2009-10-08 19:34:20
Lev, 
Let's ask a question,
Does anyone actually believe that having a disease makes you an expert in the field?? 
 
I don't believe that is the case & I believe we would all agree on one point and that is that  a patient's opinion is just that, a patient's opinion.
 
Lev, what you have to say doesn't carry any more weight than anyone else.  Now you can believe that everyone is hanging on every word you utter/write - I am here to tell you you are in fantasy land, you are no better & no worse than the rest of us!
 
Jas,
You say "I think this is my biggest problem with The Road Back.  There is a pervasive attitude there that they hold all the answers.  They know the cause, they know the cure.  Very rarely does someone step up and question anything, even when the claims are outrageous." That is your perception & your perogative but I don't happen to agree with you .. 
 
ArthritisInsight is a SUPPORT forum, RoadBack is a SUPPORT forum, and the difference is ???
 
RA is a disease widely talked about on other threads, this particular thread was a PRA thread, so are you now presuming to tell me about PRA 'cause I have PRA & OA & a few other things - am I an expert, definately not !   
 
What makes you able to dictate to me or anyone else what forum they should be a part of and which they shouldn't be a part of --- Your perceptions may not be how anyone else sees it, it doesn't make you right and them wrong or vice versa.  
 
We are all entitled to our own opinions.
 
 
Hugs right back !!
 
 
Maz-aust2009-10-08 20:34:35 [QUOTE=levlarry]Maz-Aust, I'm not sure I know exactly what you are asking.  Beautiful Joe --- couldn't have said it better myself ...
 
A doctor's/specialists opinion is exactly that, just an opinion.  Having a Degree or not having a Degree; does it really matter that someone has a degree if they don't have the answers?   No-one knows the cause of RA or PRA or a number of other AI diseases & no-one knows exactly how to treat it or what to treat it with.
 
I just don't understand why the detractors consistently choose to ignore the fact that I am using this treatment WITH THE CONSENT, AID & ASSISTANCE OF MY MEDICAL TEAM.
 
I am not asking anybody to blindly agree with me or choose AP for themselves, just to acknowledge that AP therapy actually exists just the same as all the rest of the treatment paths exist.  I don't think that's too much to ask of anyone!
Maz-aust2009-10-08 21:33:41Maz-Aust,
 
As I said before, I take offense to you being a sales representative to a cult like website with mis-leading information. If you want to bring medical data or sciece from anywhere even roadback, go for it. But as you've found in the past, mis-leading, false statements and studies and opinions stated as fact, has absolutely no place at this forum. It's not that I don't like you, it's that i don't like you posting your medical and medication opinions as medical fact. I don't like when you post lies to try to give your opinion credability.
 
That you and Joe M think that a handful (certainly not "a lot") of non professional people with absolutely no medical education, people that believe that there is a world wide conspiracy against AP therapy, with absolutely no medical trail to back up these "lots" of people being cured, are your type of people to follow show that you really don't know what you are talking about and that yous don't and didn't do your research. Your ignorant arguement that since science doesn't know what causes a disease, therefore a doctors input is no more valuable than say, you and Joe M's opinion and yous actually think yours is more correct shows just how idiot like yous are. I hate to keep using the word idiot but c'mon, yous are idiots or at least yous are speaking like idiots. Because no one knows what causes cancer, we should get our medical advise from Joe M and Maz-Aust. After all, the Doctors can't say how cancer was caused, they shouldn't be relied upon to prescribe a possible cure? That is yours' arguement, right? And yous don't think that is idiot like thinking?
 
If you are so sure of the widespread AP therapy, please, give us an idea of how large a percentage of palindromic rheumatism patients actually use AP therapy. Actually, it is probably not even 1%. You actually do a great diservice to others with palindromic rheumatism trying to swerve them to AP therapy when "medical fact" (you know real science evidence) proves that PR patients using plaquenil actually reduces the risk of going on to  rheumatoid arthritis.
 
And Maz-Aust, the difference between this forum and roadback forum is that at this forum, you cannot make a misleading medical statement or false statistic and not be called on it. At this forum there is no agenda to sway anyone to only one path. When someone here states that this drug or that drug works, it can be backed up by medical fact. It's absolutely ignorant to keep posting the greatness of a drug and yet have no medical trail to prove the real stats on the drug, ridiculus.
 
Hey Joe M,
 
Now this is the kind of quote that shows your true roadback quality. And again, Maz-Aust applauds you for it. Let me just re-post it in all of it's intelligence, here it is. Oh, and just what does STFU mean? Something you say to your mom and dad and children? Here is your quote just to make you and Maz-Aust feel proud again.
 
"Do your degreed doctors know the cause of RA?  Didn't think so.  Do you know the cause of RA?  Didn't think so.  Until you do, STFU."

That would certainly make any Joe M or Maz_Aust parent proud. Stand up again Maz-Aust, give Joe M another round of applause.

What is Palindromic Rheumatism?

Palindromic rheumatism is a rare type of inflammatory arthritis. Symptoms are often mistaken for rheumatoid arthritis symptoms. There are distinguishing features between palindromic rheumatism and rheumatoid arthritis and it is important to recognize the difference.

Palindromic Rheumatism: What You Should Know

  • As a rare type of inflammatory arthritis with distinctive features, palindromic rheumatism is sometimes referred to as a syndrome. A syndrome is defined as a collection of symptoms.

  • Palindromic rheumatism is characterized by episodes or attacks of pain and swelling of the joints, as well as tissues that surround the joints.

  • Attacks of palindromic rheumatism usually involve one to three joints.

  • Attacks of palindromic rheumatism start suddenly and last for hours or days before spontaneous remission occurs.

  • Attacks recur but with unpredictable frequency. Some doctors and patients have recognized that patterns begin to develop.

  • Palindromic rheumatism does not usually lead to permanent joint damage, unlike rheumatoid arthritis. This is one of the major differences between the two diseases.

  • Approximately 30-40 percent of palindromic rheumatism patients develop more frequent episodes or attacks over time. They may later develop rheumatoid arthritis and their rheumatoid factor may become positive.

  • The most commonly involved joints with palindromic rheumatism include: large joints, knees, and fingers.

  • Subcutaneous nodules may also develop in palindromic rheumatism patients but the nodules are different in some ways from those seen in rheumatoid arthritis patients.

  • X-rays are normal in patients with palindromic rheumatism as joint space narrowing is not present as it is in rheumatoid arthritis.

Prevalence of Palindromic Rheumatism

Rare is a word commonly associated with palindromic rheumatism. To put it in perspective, there are 2.1 million people with rheumatoid arthritis in the United States. Reportedly, between 105,000 and 262,500 people in the United States have palindromic rheumatism.

Men and women are equally affected by palindromic rheumatism, another difference from rheumatoid arthritis which is more common among women. Palindromic rheumatism affects people from 20 years old to 70 years old.

Treatment for Palindromic Rheumatism

During attacks associated with palindromic rheumatism, nonsteroidal anti-inflammatory drugs (NSAIDs) are often prescribed. Oral steroids or local steroid injections may also be included in the treatment plan. Disease-modifying anti-rheumatic drugs (DMARDs) and colchicine are sometimes prescribed to prevent future attacks of palindromic rheumatism.

The use of anti-malarial drugs (e.g. Plaquenil) in patients with palindromic rheumatism has been associated with decreased risk of developing rheumatoid arthritis or other connective tissue diseases, according to a study published in the January 2000 issue of the Journal of Rheumatology.

Sources:
1. Lam M.D., Gordon. "Rheum Rounds: Palindromic Rheumatism." Johns Hopkins Arthritis Center. December 1, 2005. 9 Feb 2007 <http://www.hopkins-arthritis.org/rheumrounds/palindromic_rheumround1.html>
2. Gonzalez-Lopez, Laura. "Decreased Progression to Rheumatoid Arthritis or Other Connective Tissue Diseases in Patients with Palindromic Rheumatism Treated with Antimalarials." Journal of Rheumatology 27January 2000 41-6. <http://jrheum.com/abstracts/abstracts00/41.html>

[QUOTE=Joe M
  Do your degreed doctors know the cause of RA?  Didn't think so.  Do you know the cause of RA?  Didn't think so.  Until you do, STFU.
 


 
 
 
 
What a charming comment...Is it your normal method of operation to tell people you disagree with to "shut the f**k up"
Lynn492009-10-09 06:52:33 [QUOTE=levlarry] [QUOTE=Lynn49][QUOTE=Joe M   hey everyone...long time
i see the ap patrol is still at it on various boards
you guys need to get outside more often
 
THE DIFFERANCE BETWEEN FORUMS
 
AI                                                                RB                                            
unmoderated                                               moderated
allows all opinions                                        allows ONE OPINION
uncensored                                                  censored
                                                                     most people use combination therapy but only
                                                                     credit AP
                                                                     every problem is a herx
                                                                       
i get a kick out of reading RB because they are so nice and kind and supportive and then they come to this board and exhibit the foulest of language and insults they can muster up.
you know the ones i am talking about.  they dont get far on AF because it is moderated but they are now threaten ie lawsuits bullying the usual
 
RB is fluff and thats it
 
Mabus,
 
Well done, well said.
 
Joe,
 
It is not I that am insulting you. It is you insulting you. Go back and re-read your posts? Are you really proud of those posts? No, I don't know what causes RA or PR but, I don't know what difference that makes as far as science and medical fact are concerned. I do know what the medical facts are concerning medications and therapys. Hoping that your wife is doing well. Hey, just go back to rb and start another donation thread, that should be good for a weeks love.
 
LEV
 
Can't you put two and two together?  My wife is on Humira.  If I was a dedicated road-backer do you think I would go along with that decision?   I think it is ludicrous to knock one theory when nobody knows for sure, so I support ALL research into the cause of RA.  Too bad you can't do the same.   LOL And your Dylan quote is still wrong, and don't try to lie and say it isn't an attempted Dylan quote.  I know it is embarrassing to be wrong, but sometimes you just gotta buck up. Joe,
 
I remember that your wie is on Humira and was just sending good wishes to her through you. I don't knock a theory unless someone is pushing an unproven theory that may cost a suceptible ra sufferer a joint replacement. There is no conspiracy against AP Joe. What it can do, is what it can do, nothing more, Joe, nothing more. It's been around for 50 or so years. It is only what it is and there is no conspiracy. Don't you think that if the roadback could produce these thousands of ra sufferers that have been "cured" or brought to remission, the world would listen. Do you think we are all part of the big conspiracy that the APers claim? We are sufferers. Show us the findings. Show us the proof. Domn't keep saying check with Pip or Maz or Suzanne or JSNM. Show us the medical trail and it will either lead to the credit minocin deserves or it will show that there is no conspiracy. If they could show the proof, they would have, long long times ago. Instead they wear themselves out, running around the bushes and attacking those asking for the truth. What's wrong with the truth, Joe?
 
And no, my signature line is my quote and i won't give my credit to Bob Dylan. Gosh, has anyone heard any of the Christmas songs from Dylans new Christmas Album. If he can sell that album Joe, maybe you should have him sell AP therapy.
 
LEV
Hi Joe,
 
What I think is a shame is that some people here keep asking for proof of remission/cure when they know there isn't any cure (not yet anyway) & remission of any kind is only possible if the treatment you are on is working for you - no matter what that treatment is!  I think that getting your symptoms under control is a much better goal.
 
I am always interested to read your posts, whether they are here or on the RB site, and yes there are people who don't want to know about any other way of treating these diseases other than they way they are doing it themselves.  Surely there is nothing wrong with saying ' great, glad that's working for you' rather than being so negative.
 
Am really glad to see that you are continuing your journey of discovery with all this & clearly keeping up to date with the latest developments.
 
BTW how is your wife, I hope she is well at the moment.
 
Maz  
 
 
 
 
Maz-aust2009-10-12 15:43:13[QUOTE=by levlarry in black]
[my replies in blue]
 
 As I said before, I take offense to you being a sales representative to a cult like website with mis-leading information.
You had better be able to back that up Lev --- I am not a sales representative for anywhere ... & it is only your opinion & who are you exactly ?? why should anyone listen to you ??
 
If you want to bring medical data or sciece from anywhere even roadback, go for it. But as you've found in the past, mis-leading, false statements and studies and opinions stated as fact, has absolutely no place at this forum.
Where is your medical data to back up your beliefs, where is your medical data to back up that traditional medications work ??   The truth is that it is all hit and miss ..
 
It's not that I don't like you, it's that i don't like you posting your medical and medication opinions as medical fact.
Another misleading statement Lev, I have never posted my opinions as medical fact.
You on the other hand make some outrageous statements.
 
That you and Joe M think that a handful (certainly not "a lot") of non professional people with absolutely no medical education,
Interesting isn't it that you (LEV) are also a non professional with no medical education, but somehow we should listen to you !! 
 
"lots" of people being cured,
When have I ever said 'cured' ???  Tell the truth Lev for once in your life - I have NEVER said any treatment is a cure!! 
 
If you are so sure of the widespread AP therapy, please, give us an idea of how large a percentage of palindromic rheumatism patients actually use AP therapy.
The percentage of people who are using AP therapy to treat their disease is totally irrelevant.
 
swerve them to AP therapy
I have NEVER swerved anyone to do anything other than to mention to them that AP is another treatment path they should know exists & then to research it for themselves along with all the other treatment options they have available to them.
 
when "medical fact" (you know real science evidence) proves that PR patients using plaquenil actually reduces the risk of going on to  rheumatoid arthritis.
WOW -- Lev, that's a big statemement.
You are now saying that taking plaquenil actually reduces the risk of PRA developing on to RA !!  where is your 'real scientific evidence of that statement', in your words 'SHOW ME THE PROOF!' what scientific journal says plaquenic reduces the risk of developing RA ??
 
the difference between this forum and roadback forum is that at this forum, you cannot make a misleading medical statement or false statistic and not be called on it.
Lev, your posts show everyone that being able to make misleading statements is not only possible on this website forum but that it is the norm !
 
At this forum there is no agenda to sway anyone to only one path. When someone here states that this drug or that drug works, it can be backed up by medical fact.
No, I don't believe that is the case, people post all the time that their medication works for them, which is great, but I don't see it being backed up by 'medical fact'
 
Lev,
I think it is sad that you live with severe RA, but you have become a bitter twisted man as a result & somewhere along the line you actually believe that because, in your mind, your symptoms are worse than someone elses symptoms that it makes you an expert in all things to do with RA ....
 
I feel very sorry for you!
 
Maz,
 
 
Maz-Aust,
 
If arthritis is a micr organism that is killed by anti-biotics, why is it so hard to completely eradicate them. If the innitial kill off is so great that it actually causes great pain, it would seem that there would also be a liver and kidney overload as is the case when large amounts of kill off of cancer cells.
 
Have you actually read the Jarisch-Herxheimer papers, published in German? It's strange because you always talk about the painful Herxheimer reaction to anti-biotic kill off and how it causes such pain in the joints. Can you tell me or show me that Herxheimer actually wrote about such things? Of course, you did do your research, right?
 
"Back in the early days of antibiotic therapy, doctors noted that people being treated for syphilis would often suffer from fever, chills, muscle aches, headaches and worsening skin lesions (in secondary syphilis) immediately after starting the antibiotics.

Two of these doctors – Dr. Jarisch and Dr. Herxheimer – discussed these reactions in papers they published,

[Jarisch A. Therepeutische Versuche bei Syphilis. Wien Med Wochenschr (1895) 45: 721–42. ; Herxheimer K, Krause D. Ueber eine bei Syphilitischen vorkommende Quecksilberreaktion. Deutsch Med Wochenschr (1902) 28: 895–7. ]leading to the phenomenon being called the “Jarisch-Herxheimer reaction” (sometimes shortened to the “Herxheimer Reaction” or, worse yet, “herx”). Readers familiar with German will note that the article by Dr. Herxheimer is discussing a reaction seen after treating syphilis with mercury. This might account for number of “alternative” practitioners who claim to see a “Herxheimer reaction” while chelating for mercury, but I doubt that many of them have actually read the paper.

The Jarisch-Herxheimer reaction is also seen during treatment of Borrelia infections (Lyme disease and tick-borne relapsing fever), Coxiella infections (Q-fever), typhoid fever (Salmonella enterica serovar Typhi) and trichinellosis (a parasitic worm). It is caused by the rapid release of endotoxins from the bacteria (or parasitic worms) when they die from the antibiotic.

[Note: this reaction is due to inflammatory cytokines secreted in reaction to the sudden release of endotoxins, so "boosting" the immune system would only make the reaction worse.]

Anyway, it’s important to note that the Jarisch-Herxheimer reaction has not been noted during treatment of fungal infections (which would include “yeast”), despite the myriad references to “Herxheimer reaction” or “herxing” (shudder!) during “alternative” treatments of “yeast”.

Also, the symptoms of the Jarisch-Herxheimer reaction are similar to a bad “cold” or influenza-like illness (apart from the worsening of syphilitic skin lesions). It does not include the many fanciful symptoms that are often attributed to it by enthusiastic but poorly-educated “alternative” practitioners (and their fans).

Of course, a simple way around the limitations of the Jarisch-Herxheimer reaction is to simply avoid the term. Many “alternative” practitioners simply attribute any untoward symptoms (or lack of improvement) to “the toxins coming out”. Thus,  a worsening in their behaviors after starting an “alternative” therapy, it’s “the toxins coming out”. If they develop a rash, lose their appetite, turn sickly yellow, suffer vomiting and diarrhea or collapse into a stupor….it’s “the toxins coming out”.

It’s a great system – if the patient gets better, it’s a sign that the “therapy” is working; if the patient doesn’t get better (or even gets worse), it’s a sign that the therapy is working.

Heads I win; tails you lose.

levlarry2009-10-13 06:49:59Maz-Aust,
 
You asked for the science concerning plaquenil use being benificial in keeping palindromic rheumatism patients from going on to rheumatoid arthritis and here it is. See how that works?
 

Decreased Progression to Rheumatoid Arthritis or Other Connective Tissue Diseases in Patients with Palindromic Rheumatism Treated with Antimalarials

LAURA GONZALEZ-LOPEZ, JORGE I. GAMEZ-NAVA, GIAN JHANGRI, ANTHONY S. RUSSELL, and MARIA E. SUAREZ-ALMAZOR

  ABSTRACT.

  Objective.
To determine whether the use of antimalarials is associated with a reduction in the risk of developing rheumatoid arthritis (RA) or other connective tissue diseases in patients with palindromic rheumatism.

  Methods. We conducted a retrospective cohort study based on a review of medical records to evaluate the outcome of patients with palindromic rheumatism referred to an academic center from 1986 to 1996; 113 patients complied with the selection criteria, including diagnostic criteria for palindromic rheumatism and onset of disease since 1980. After adjusting for potential confounders, Kaplan-Meier methods and Cox regression models were used to estimate the risk of developing RA or other connective tissue disease in patients who had received antimalarials compared to those who had not.

  Results. Age of disease onset was 40 � 12 yrs, and mean disease duration 4.8 � 4 yrs; two-thirds of the patients were female. Sixty-two (55%) patients received antimalarials, for a mean duration of therapy of 28 mo. Thirty-three (29%) patients developed RA, 3 developed systemic lupus, and 4 developed other connective tissue diseases. Twenty (32%) patients in the antimalarial group developed a secondary disease, compared to 20 (39%) who did not receive therapy. Statistically significant differences were observed comparing time to event in both groups. The estimated median time to development of a chronic disease was 162 months in treated and 56 months in untreated patients. After adjusting for other variables in the Cox regression models, significant risk reduction in the development of a secondary disease was observed for antimalarial use (hazard ratio = 0.24; 95% CI 0.09�0.61). For RA, the risk reduction was 0.19 (95% CI 0.07�0.57). We conducted a sensitivity analysis around our censoring estimates. The risk reduction remained statistically significant, with 0.36 for RA and 0.41 for RA or other connective tissue disease.

  Conclusion. Use of antimalarials in patients with palindromic rheumatism is associated with a reduction in the risk of developing subsequent RA or other connective tissue disease. (J Rheumatol 2000;27:41�6)

  Key Indexing Terms:

ANTIMALARIALS
RHEUMATOID ARTHRITIS
PALINDROMIC RHEUMATISM

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