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Thread: AAN recommends not prescribing ABCRs for progressive MS

  1. #1
    Distinguished Community Member agate's Avatar
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    Default AAN recommends not prescribing ABCRs for progressive MS

    So far as I know, the prescribing information for the ABCR drugs still states that they are only for the treatment of RRMS--though as I recall Betaseron might have been also listed for progressive forms of MS.

    But quite a few neurologists, including a couple I have had, have been prescribing these drugs regardless of the type of MS you have, maybe on the theory that doing something is better than doing nothing. Now they're being advised not to.

    Anyway, the American Academy of Neurology (AAN) has come out with 5 recommendations for neurologists, including a recommendation not to
    prescribe the ABCR drugs for progressive MS.



    An abstract in PubMed, February 23, 2013, gives information about the American Academy of Neurology (AAN)'s "Top Five Recommendations in the Choosing Wisely campaign promoting high-value neurologic medicine and physician-patient communication." The AAN published these recommendations recently in collaboration with the American Board of Internal Medicine Foundation and Consumer Reports.

    "A Choosing Wisely Working Group of 10 AAN members was formed to oversee the process and craft the evidence-based recommendations. AAN members were solicited for recommendations, the recommendations were sent out for external review, and the Working Group members (article authors) used a modified Delphi process to select their Top Five Recommendations."

    Recommendation #4 states:

    Recommendation 4: Don't prescribe interferon-β or glatiramer acetate to patients with disability from progressive, nonrelapsing forms of multiple sclerosis.

    The abstract can be seen here.

    More information on these recommendations is here.
    Last edited by agate; 02-24-2013 at 10:02 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    This is interesting. I am surprised but need to read the whole thing to see if they had a "why.?" My stance would be "why not?"

    Thanks for this Agate- I'll read it soon.
    ANN
    There comes a time when silence is betrayal.- MLK

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    Like Ann, my question is "why not". Also, while I may be secondary progressive, before I was put on a DMD I had a number of bouts with optic neuritis. I have not had this since and thank God all the time for that. So as long as my Neuro will let me have Rebif (as much as I hate taking it) I will continue, if for no other reason than I believe that it has saved my eysight so far.
    Virginia

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    Distinguished Community Member agate's Avatar
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    This is the explanation that is given:

    Interferon-beta and glatiramer acetate do not prevent the development of permanent disability in progressive forms of multiple sclerosis. These medications increase costs and have frequent side effects that may adversely affect quality of life.
    My guess is that they're bending over backwards to make everything "cost effective" now that the skyrocketing cost of medical care is being discussed so often.

    If you're willing to put up with the reduced quality of life that you might have as a result of the side effects, I have a pretty good idea that the neuros will go right on prescribing the ABCR drugs for anyone with MS who wants them.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member jendie's Avatar
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    I'm grouchy about this topic because neuros decide that patients should take things because they should be on SOMETHING.... my neuro pushed meds that I am allergic to because of this thought process.

    Jendie
    I've been a member of this forum during its different incarnations since I was dx in 9/98


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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by jendie View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I'm grouchy about this topic because neuros decide that patients should take things because they should be on SOMETHING.... my neuro pushed meds that I am allergic to because of this thought process.
    How nice to see a photo of you!

    I agree that neuros are too eager to prescribe but I've heard that this is a problem doctors have. They almost feel like failures (I guess) unless you can leave the doctor's office with a prescription in hand. They feel as if they "ought" to have something to offer you.

    I wish they'd rethink that idea.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  7. #7

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    I was SPMS at DX's 12/20/2003, I'm male and 60 yrs old now and damn tierd of sticking myself every day! my wife thinks that going off is a big risk, but why do it if it don't help. i see my MS Doc 4/1 i will ask him about this.mark

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    Distinguished Community Member agate's Avatar
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    Hi markaf and WELCOME to this place! This MS board has existed longer than any MS board that I know of, and on the Internet that's an achievement, I think.

    Neuros seem to go by the MRIs. So if you haven't had an MRI recently, when you mention going off the DMD, you'll probably find yourself getting an MRI--to see how you've been doing on the DMD.

    Many neuros will probably still want their SPMS patients on a DMD in case it might do some good. There's some evidence that a DMD just might help to slow progression even in people with SPMS.

    You hope things won't get worse, and if they do but you're not on one of the DMDs, you might always wonder if your MS wouldn't have progressed so fast if you'd gone with the DMD. So you take the DMD just so you'll never feel that way. You'll know that if you get worse, at least you've been doing what you can.

    --Except that there's also some slight evidence that in some people with progressive MS, taking a DMD can actually make the MS worse.

    So what it comes down to is that it's your choice. If you don't mind taking the DMD and it's not hurting your financial situation or anything else that much, you could consider just staying with it for whatever good it might be doing.

    Good luck with the doctor. I'd be interested in knowing how this turns out.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  9. #9

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    hello agate, i've been a member of BT a long time(fall of 2002). i miss the old days of BT,my MS took a bad turn downward about 3 years ago,but thanks to my wife i'm OK.mark.f

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    Distinguished Community Member Jeanie Z's Avatar
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    Smile

    :) I have now been on a 4.5 mg capsule of LDN nightly for 14 years. I have had NO new symptoms and NO further progression since going on the LDN.

    I was on Betaseron for over 5 years and on Avonex for 2 years and continued to go downhill on both. I had to hunt for a doctor willing to prescribe LDN after my doctor retired but I found one and have been able to stay stable with LDN.

    The site for info on LDN is www.lowdosenaltrexone.org and click on the MS link. I printed that out and took it to my doctor and because it is such a small dose he let me try it. You need a RX and you have to have it made by a compounding pharmacy.

    I wish I had found LDN before I was in a scooter, but I am happy to be staying where I am. I have had MS since I was 18 but it was not diagnosed for years. I am now 71 and I changed to secondary progressive in 1992.

    With my Mother (12/17/12) and my husband (2/1/13) dying within 5 weeks of each other I am going through a lot of paperwork, sorting, etc. and I doubt that I could handle all of it as well as I am without the LDN.

    Good luck with your doctors appointment. Jeanie :)

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