Little Lymphoma Risk Seen With New Arthritis Drugs

[Tiff]

[user=52]Susan(SD)[/user] wrote:

     26 out of 6600 people with RA took TNF blockers who then got lymphoma = 3.9%
     336 out of 61400 people with RA not on TNF blockers got lymphoma = .5%
  
   

THAT is what I was looking for!  Thanks, Susan.

As far as the corruption of scientific data… well, it looks like we might consider ourselves a Post-Scientific society.  Is anyone mourning the death of Science?  I am.

[Maz]

[user=45]Tiff[/user] wrote:

As far as the corruption of scientific data… well, it looks like we might consider ourselves a Post-Scientific society.  Is anyone mourning the death of Science?  I am.

Hi Tiff,

Don't want to add to the mourning, but this came in on the CTLyme support group and it's a generalized commentary on the same topic:

http://fanaticcook.blogspot.com/2009/05/corrupted-research.html

Monday, May 25, 2009

Corrupted Research

When a former editor-in-chief of The New England Journal of Medicine, says:

“It is simply no longer possible to believe much of the clinical research that is published , or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.”

It's worth paying attention.”
 
Peace, Maz

[Tiff]

 

Thanks, Maz… misery loves company  😉

Pass the tissues!

:crying::crying::crying:

It looks like awareness is building which is about all we can hope for at this point.

[Susan LymeRA]

Well, this thread just cooks my goose!

Joe, thanks for trying to bring some reassurance about the biologics to the board.  Like Linda, I find myself having to take Enbrel and I have developed a love/hate relationship with it. 

I will be most happy when I am done with it which is definitely the goal of my doctor and I.

I have read one of Dr. Angell's books and it is very well written and well documented.  Believe me, if she were lying even a little, the pharmacutical industry would jump all over her with lots of attorneys and press.

The sad state of science, of course, is the result of greed.  We have a very corrupt government who is selling us down the river for money.  And I'm not talking one party or the other.  They are both hopelessly corrupt.

My mother tends to blame the rich business owners, but I do not.  They have no legal obligation to me whatsoever.  Of course they will try to make as much money as they can.  That is their purpose in life.  HOWEVER, the politicians have been elected by us and are supported by us for the sole purpose of acting in our best interests.  Our so called “lawmakers” are supposed to protect us from business corruption.  HA!

It is like when a spouse cheats.  The one he/she cheats with had no obligation to us (other than moral) but the spouse has promised under oath to be faithful and has breached that promise.

So, I hold our government at fault here.  They have relaxed the laws and built in loopholes to help the pharmacutical industry, among many many others, to rape, pillage and rob us unto bankruptcy.  They have sold our country down the drain.

It is disgusting!

And believe me, the last thing we need to do right now is give even more power to our corrupt government!

grrrrrrrr

Susan

[Pip]

Actually, I mourn the loss of science.  It was much easier to 'just believe' somebody was looking out for me than to realize my continued health was my responsibility.

Susan, be a sweetie and 'translate this for me'.  On the surface, it looks like it's supporting the no-lymphoma conncection, yet they ran it for only 3 months and the EBV virus was beginning to reactivate.  Please, what's your take on this?

http://arthritis-research.com/content/pdf/ar2708.pdf

Hugs,

Pip

PS – is there a book out there that's more accurate on the TNF's?  What was your book comment about???

[Joe M]

[user=45]Tiff[/user] wrote:

As far as the corruption of scientific data… well, it looks like we might consider ourselves a Post-Scientific society.  Is anyone mourning the death of Science?  I am.

I'm not.  After all, it was science that created biologics in the first place, no small task.  Dr. Brown was a researcher.  There are many diseases today that are manageable instead of fatal thanks to science.  Galileo and Copernicus probably thought science was dead, but the world eventually accepted the earth was round and revolved around the sun. I think its a matter of sifting through the junk and being critical, one thing this board is very good at (in a good way). 

[Pip]

Hi Joe –

Did you follow the link on the fantasticcooks link to the NYTimes book review by the former NEJM Editor?  How are we going to beat that?

Hope you're doing well!

Pip

[Tiff]

[user=20]Joe M[/user] wrote:

[user=45]Tiff[/user] wrote:

As far as the corruption of scientific data… well, it looks like we might consider ourselves a Post-Scientific society.  Is anyone mourning the death of Science?  I am.

I'm not.  After all, it was science that created biologics in the first place, no small task.  Dr. Brown was a researcher.  There are many diseases today that are manageable instead of fatal thanks to science.  Galileo and Copernicus probably thought science was dead, but the world eventually accepted the earth was round and revolved around the sun. I think its a matter of sifting through the junk and being critical, one thing this board is very good at (in a good way). 

Joe, 

Your reply indicates that you think I am suggesting science is a fail (as my kids would say it).  That is not what I am saying here.  I am not disputing the scientific method or the positive outcomes from the scientific approach that we have seen in the last few centuries.  I am not saying that there are no scientists still striving to practice science and produce new knowledge and innovation.  What I am saying is that the historical climate that has produced those amazing results is in no way guaranteed to go on forever, and the basis for which it originally found its power is now seriously in question on the large scale.  I think the articles people have posted say that very clearly.  Are we not supposed to enquire why that might be or seek to rectify it before it goes further?  Sorry if I sound like a bummer to you. 

[Steven]

Joe,
 
Thanks for the link and let's hope that your wife isn't in the 3.9 percent who get lymphoma. One thing that I've noticed in my personal observations from knowing other people on anti-TNF drugs, is that the adverse reactions seem to be a lot more prevalent (and serious) than what the drug-company-funded studies would have you believe.
 
I can't help get the feeling that whenever you post pro-TNF inhibitor drug info here on an AP board, you are not so much trying to convince others, but are trying to justify your and your wife's treatment choices. I don't know, maybe I'm wrong about that, but I don't think anybody needs to justify anything when it comes to this stuff.
 
One thing I do wonder about is how counter productive it is to AP to inhibit TNF, which plays such a vital role in fighting intracellular infections.
 
I wish you and your wife the best,
 
Steven
 

[A Friend]

[user=667]Steven[/user] wrote:

…I can't help get the feeling that whenever you post pro-TNF inhibitor drug info here on an AP board, you are not so much trying to convince others, but are trying to justify your and your wife's treatment choices. I don't know, maybe I'm wrong about that, but I don't think anybody needs to justify anything when it comes to this stuff.
 
One thing I do wonder about is how counter productive it is to AP to inhibit TNF, which plays such a vital role in fighting intracellular infections…
 

Steven, Joe, All,

I'm not a scientist, but after having to get involved in choosing and guiding in a course for myself (based on what I've read/learned that seems to fit my own case… and has profoundly worked for specific problems), my point of view (thinking) for me is that TNF inhibitors for me would cause me to become much more acidic and easy prey for candida albicans/fungus/parasites, etc. — and allow this more quickly as I “roll over and play dead.” We organisms are all so different.  There must be some benefits of TNF's for some, or they would not be used  — [Edit, to clarify:] BUT MY BELIEF IS THEY WOULD DEFINITELY NOT BE GOOD FOR ME.      

In my own case, I believe during the first two years of chronic illness, my own body was so debilitated by the approx. 15 RXes of abx, without benefit of replacing probiotics, that it allowed candida albicans/fungus to get a firm stronghold in my connective tissue and mutate from the less destructive form to the mycelial form. I've numerous scans to bear this out.  (And, would you believe, I never had the usual “telltale” woman's type problems.)  

In recent months/days, I've finally read (by a scientist who has dared to confront the medical/oncology community) how this same scenario is the basis for expansion of fungus in the body and life threatening cancer, and other chronic illness diagnoses — which I have appeared to have on two occasions, in 2000 and 2007, but I believe due to a balancing act (doing most everything I thought was adequate to fight fungus — but now don't believe was enough), the stage is still set, but as yet no tumor has been detected.  The scientist referred to above has offered, in lieu of the usual often devastating treatments, that a simple daily regimen at least be tried for a while that “first does no harm”  and may fight a better fight at clearing up not only the fungus, but stopping the possibility of cancer and other dx'es.  Sounds like a plan for me. 

I believe it's important for us as patients to be informed and try to choose wisely (hopefully with our physicians if we trust their judgment).  And this is not an easy task, I admit. 

AF

 

[Joe M]

[user=45]Tiff[/user] wrote:

Joe,

Your reply indicates that you think I am suggesting science is a fail (as my kids would say it).  That is not what I am saying here.  I am not disputing the scientific method or the positive outcomes from the scientific approach that we have seen in the last few centuries.  I am not saying that there are no scientists still striving to practice science and produce new knowledge and innovation.  What I am saying is that the historical climate that has produced those amazing results is in no way guaranteed to go on forever, and the basis for which it originally found its power is now seriously in question on the large scale.  I think the articles people have posted say that very clearly.  Are we not supposed to enquire why that might be or seek to rectify it before it goes further?  Sorry if I sound like a bummer to you.

 Yes, I did think you were completely writing off science.  Thanks for clarifying.

[Joe M]

[user=667]Steven[/user] wrote:

Joe,
 
I don't know, maybe I'm wrong about that, but I don't think anybody needs to justify anything when it comes to this stuff.
 

Steven
 

Steve,

I'm with you – nobody has to justify their chosen treatment for RA.  As for trying to convince myself, I think if you knew my interpretation of these studies you would see I'm already convinced.  My opinion is, all the studies that try and link biologics to cancer are flawed.  That is because researchers can not know if the people who got cancer would have got it anyway without the biologic.   All they can do is compare numbers, which leads to the wide variation in study results we see in these kinds of studies.  Just the fact there are studies that come down on both sides of this issue gives me assurance.  My opinion is, if there were truly a link, you would see over half of people on biologics getting cancer. 

Joe

[Suzanne]

[user=20]Joe M[/user] wrote: 

   My opinion is, if there were truly a link, you would see over half of people on biologics getting cancer. 

Joe

Conversely, wouldn't biologics also put over half of people in remission?  If there was truly a link to that, as you put it?

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[SusanSD]

Pip,
    the article you sent is IMHO also “suspicious”. I know, I am starting to sound like a broken record, but the fact that they did not include a data table for others to check the results for themselves is very worrisome. They did not include any means or standard deviations and yet they were comparing groups!

    I know they keep saying that the comparison of this group to that group showed no significant difference from control group, and therefore they use that to say that those on methotrexate or TNF blockers are therefore “fine”, but here is the statistical trick that they might be hiding behind. If your groups are on the small side, your chances of finding a significant difference (p value) get smaller!

    For my research study, I had 30 in one group and 30 in another, and thought that was a respectable size, but really my power to detect significant results was less than 50%. That is why my professors made me calculate effect sizes, to determine if there was a difference that is independent of sample size. But did these researchers report effect sizes? NO. :headbang:

    I can't say that their results are right or not because of the lack of data. Sure, they show graphs with trend lines, but you can hide ANYTHING with graphs! I am certainly not impressed and by counting the trend lines (positive vs. negative), I am thinking that something is not jiving with their conclusions. I think they're hiding something but I can't prove it.

Here is some confirmation that health quality is not so great from the Agency on Healthcare Research and Quality:

New Reports Show Weak Progress on Health Quality By Carolyn M. Clancy, M.D.
June 2, 2009
If you get sick or have surgery, you have only a 3 in 5 chance of getting the care that's recommended for you. This statement is so shocking that I wouldn't blame you for questioning it.
We have one of the most advanced health care systems in the world, with thousands of dedicated doctors and nurses and many state-of-the-art hospitals. We know that errors happen and that not everyone gets access to health care when they need it. Still, we expect that when we seek out care, we'll get the right care.
I wish that were consistently true. The fact is that U.S. patients receive the recommended care for their illness or condition only about 60 percent of the time, according to a set of new reports from my agency, the Agency for Healthcare Research and Quality (AHRQ).
The reports also show that patient safety actually is getting worse. For example, 1 in 7 hospitalized Medicare patients experiences significant harm when hospitalized, and poor, less educated and minority Americans tend to receive poorer quality of care than whites.
These reports also show that:

• Only 40 percent of patients with diabetes got the three recommended preventive exams in the past year, a rate that has stayed the same over time.[/*:1so21m6b]
• Only half of obese adults and children were advised to exercise more and eat a healthy diet.[/*:1so21m6b]
• Seven out of 10 adults with mood, anxiety, or impulse disorders got inadequate treatment or no treatment at all.[/*:1so21m6b]
• Blood infections caused by catheters affect thousands of hospitalized patients each year.[/*:1so21m6b]

……..more at http://www.ahrq.gov/consumer/cc/cc060209.htm

[Joe M]

[user=18]Suzanne[/user] wrote:

[user=20]Joe M[/user] wrote: 

   My opinion is, if there were truly a link, you would see over half of people on biologics getting cancer. 

Joe

Conversely, wouldn't biologics also put over half of people in remission?  If there was truly a link to that, as you put it?

Hi Suzanne,

I don't think I understand your question.  But that won't stop me from trying to answer it ;).

If I ever implied biologics guarantee remission, I apologize because I certainly don't think it is true.

But yes, if someone claimed biologics always lead to remission and then set out to prove it with a study, I would expect nearly all the patients to have achieved remission (there are always a few exceptions). 

I think that is consistent with my view of the biologics – cancer studies.

Joe

 

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