Home Forums General Discussion Little Lymphoma Risk Seen With New Arthritis Drugs

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  • #302292
    Joe M
    Participant
    #330373
    ClaudiaMarble Falls
    Participant

    Joe,

    Read the article,not impressed.Why take immunosupressents when antibiotics are working so well for so many of us? I went through all of the conventional drugs before learning about Dr. Brown and then finding a GOOD physician to treat me with antibiotics and a gluten free diet.

    Claudia

      

    #330374
    Joe M
    Participant

    Happy you found something to work for you.  Some people around here do take them and are legitimately concerned about the cancer risk. 

    #330375
    ClaudiaMarble Falls
    Participant

    I hope the article is correct and I am sorry that antibiotic therapy alone isn't working for your wife.

    Claudia

    #330376
    Tiff
    Participant

    ******Malignant lymphomas occurred in 26 patients on anti-TNF therapy and in 336 of those not treated with these agents, the researchers report in the Annals of the Rheumatic Diseases.

    They calculate that the risk of developing malignant lymphoma was 1.35-fold higher for rheumatoid arthritis patients given TNF-blockers compared to those who were not.******

    This seems backward to me, and it seems to indicate that the meds do cause a higher risk.  It is hot around here today, so maybe my brain is just not functioning properly. 😕

    Except that I don't get these paragraphs, this is good news.  Thanks for sharing, Joe.

    #330377
    Suzanne
    Participant

    Tiff, I'm with you!  It seems like really good news could have been presented in more straightforward language.

    “1.35-fold”.

    Hmmm.  Is it me, or is the next whole number 2 and “two-fold” sounds kinda high?

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

    #330378
    linda
    Participant

    Thanks Joe. Any bit of good news on this front is helpful to my peace of mind. In a perfect world, we would all be able to tolerate our pain and joint damage without the need for these meds, but alas, this is just not reality. Down to 7.5 mg pred from 15 mg 2 months ago, btw. I feel lousy in some ways but better in others. My blood sugar is not as high and better regulated, so I'm hoping the metabolic syndrome may still be reversible. Hope all is wel with you and Michelle; did you have your surgery and did it help?

    linda

    #330379
    Suzanne
    Participant

    [user=11]linda[/user] wrote: 

    In a perfect world, we would all be able to tolerate our pain and joint damage without the need for these meds, but alas, this is just not reality.

    That is true, Linda, and I'm glad you noticing positive things on your current therapies!  You have to do what is right for you. 

    I question pretty much all studies, though.  Saw this today:

    http://pharmagossip.blogspot.com/2009/06/mark-lanier-disses-record.html

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

    #330380
    Joe M
    Participant

    Thanks for asking Linda.  Surgery went great and I'm almost back to 100%.  Looking forward to summer!  

    Wishing everyone a great weekend!

    #330381
    SusanSD
    Participant

    Tiff, I am with you …..methinks the numbers don't look so good, and I am a researcher.

    The percentage of folks on anti-TNF therapy who developed lymphoma was 3.9%, compared to those who had RA and weren't taking TNF blockers who developed lymphoma, which was 0.5 %. That may seem like small numbers but in the context of the study sample, 1% means 680 people.

    I calculated the odds ratio and it was .72. I don't have the original article but it would be interesting to see who funded the study. If it was the pharmaceutical company, they would have a vested interest in downplaying any increased risk of lymphoma. The fact that they are saying it's a small increased risk doesn't reassure me.

    Of course, I would like to know the not so black and white questions, like what is the association between duration of anti-TNF therapy and lymphoma risk? If it's the longer you take the TNF blockers, the higher the risk for lymphoma, that is the kind of info that people need to make informed decisions about their health.

    This study was based on Swedish folks, who have a different diet (more fish!), lifestyle, and health care system.

    Disclaimer: My Mom developed lymphoma due to years of taking the immunosuppressant Arava.

    #330382
    Tiff
    Participant

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

    Tiff, I am with you …..methinks the numbers don't look so good, and I am a researcher.

    The percentage of folks on anti-TNF therapy who developed lymphoma was 3.9%, compared to those who had RA and weren't taking TNF blockers who developed lymphoma, which was 0.5 %. That may seem like small numbers but in the context of the study sample, 1% means 680 people.

    I calculated the odds ratio and it was .72. I don't have the original article but it would be interesting to see who funded the study. If it was the pharmaceutical company, they would have a vested interest in downplaying any increased risk of lymphoma. The fact that they are saying it's a small increased risk doesn't reassure me.

    Of course, I would like to know the not so black and white questions, like what is the association between duration of anti-TNF therapy and lymphoma risk? If it's the longer you take the TNF blockers, the higher the risk for lymphoma, that is the kind of info that people need to make informed decisions about their health.

    This study was based on Swedish folks, who have a different diet (more fish!), lifestyle, and health care system.

    Disclaimer: My Mom developed lymphoma due to years of taking the immunosuppressant Arava.

     

    Thanks, Susan, but I am still confused.  In the paragraph I quoted it says only 26 people who were ON TNF blockers developed the cancer while 336 who were NOT ON TNF blockers developed the disease.  That sound GOOD.  Was this from different sized groups that they compared?  Is that why the percentages you give are different?  I just didn't read that anywhere so the numbers seemed backward to me.

    Your question is, of course, even more detailed.  If they can't figure out if the drugs increase the risk or do not, then they SURE can't figure out if it increases it more over time.  Yet these are the very things we need to know.

    For myself, I am not convinced of anything nor have I seen any data that would give me reason to be convinced of anything, at least thus far.  Given the fact that I have already had a form of cancer, and I was not on anything but ABX (for my skin, not for RA) when it developed, I still feel very suspicious that the disease process itself  is responsible for the development of the cancer, not the treatments.  Theoretically, however, it makes no sense to think that blocking the part of the immune system that serves to stop cancers will not allow more to develop.  Highly unintuitive, and sometimes intuition is all we have it seems!

    To make matters worse, we are also not free to openly trust just any “research” that comes along.  It is going to take much more time for adequate knowledge to mount up either way before it can be trusted.  In the short term people can get away with things that often do not hold up long term.

    My friend sent me this article today.  How sad is this?

    One in seven scientists say colleagues fake data
    http://www.timesonline.co.uk/tol/news/uk/science/article6425036.ece

    This is not to say that I am not glad to read what appears to be good news.  I am glad, and I am glad you posted it, Joe.  We need all the hope we can get from all angles.  I don't tend to do as much research as I would like to do (as much as I would ordinarily do about things) because it is often so discouraging.  I am glad others share what they find.

    #330383
    Joe M
    Participant

    I also wonder if the study took into account that just having RA in the first place increases a person's chances of getting lymphoma?  This a well known and documented fact so I was surprised this study did not mention it. 

    “Malignant lymphomas occurred in 26 patients on anti-TNF therapy and in 336 of those not treated with these agents, the researchers report in the Annals of the Rheumatic Diseases.” —- This to me means controlling RA symptoms may in fact be preventative? 

    I always have to remind myself that correlation does not equal causation – for example – Susan's mother got lymphoma and was taking Arava – does that mean we can unequivocally blame the Arava?  Not necessarily.  The obvious problem is we can't get in the time machine and undo the Arava to see if she still would have developed lymphoma. 

    I'm also SHOCKED to hear scientists fake data – not.  When there is big money at stake people will do almost anything.  All we can do is make educated guesses based on as many sources we can gather and hope for the best. 

    #330384
    SusanSD
    Participant

    Tiff,
         The reason I question who presented the results of this study is because it is a bit deceptive. Yes, 26 of the people on TNF blockers developed lymphoma and this sounds better than the 336 people who weren't on TNF blockers who then developed lymphoma, but you have to consider the pool of people in each group.
         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%

         The fact that they hid behind actual counts (number of people) instead of percentages and ratios makes me a bit suspicious about the researchers' motives. Even in science there is bias, so I always taught my graduate students to make their own decisions and don't just believe whatever the article says. I have actually run data analyses from numbers given in a research article and come up with different conclusions! 😯

    Joe,
         I know that association doesn't equal causation, but the second opinion oncologist at John Hopkins said my mom got the lymphoma from the Arava. I asked, How do you know that?
         They said that non-RA patients who take Arava have higher rates of lymphoma. I was so mad at the medical establishment because in my mind, when you take a medication it is supposed to improve your health, not swap one malady for another!
         When I typed Arava and side effects into the search box, I was shocked at the number of sites saying “Are you looking for an Arava lawyer”?  It might be the next Celebrex/Vioxx fiasco.

        
       

    #330385
    Suzanne
    Participant

    [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%

         The fact that they hid behind actual counts (number of people) instead of percentages and ratios makes me a bit suspicious about the researchers' motives.
        
       

    Thank you, Susan.

    So many biologic studies do this type of thing, it drives me crazy.

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

    #330386
    A Friend
    Participant

    Susan/SD,

    Thanks for your input, comments and analyses.  I feel better knowing you are reading and posting on RBFBB.

    AF

    EDIT:  Just ran across this on the board while looking for something else.  It was posted under another thread, but information contained in it may have some good alternate routes to follow — my address link window has disappeared, so had to copy and paste this search result in lieu of the actual link to the post's page:

    General Discussion > FDA Reviewing Arthritis Drugs for inflammation, Possible Links to Cancer (0 replies – 88 views)   Sun Oct 26th, 2008

    An internet search, using the words: “acidosis + enbrel and humira”, found this site which I think can be VERY important for all of us, …

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