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Thread: Unclear benefit for DMTs in older people

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    Distinguished Community Member Sunshine's Avatar
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    Default Unclear benefit for DMTs in older people


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    Distinguished Community Member agate's Avatar
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    Interesting that they're finally stating something that wasn't being very often mentioned until recently even though if you kept questioning a neurologist enough, you'd generally get the answer.

    Three different neuros have been in favor of my taking one of the injectable DMDs or Tysabri. Each time I asked, "But haven't I had SPMS for too long?" and "I think I may be too old for this treatment--?"

    Each time the answer was, "Well, the drugs haven't been tested for people with SPMS, or on people who've had MS for such a long time, or on people your age but there might be some benefit for you anyway."

    I was willing to try them on that basis--as a sort of guinea pig.

    But I did give up on that idea after 6 years of trying.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Agate, the Doctor at the end of the article did say he does not believe this is true, if I read it right. I think the big take away for me is that they do not know.
    Virginia

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    Distinguished Community Member agate's Avatar
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    I think you're right, Virginia, and many doctors including those neuros who wanted me on MS drugs are apparently still saying that the drugs just might be useful in people over 50.

    And anyway, since they're there for us and apparently do no great harm that anyone knows of, why shouldn't we take them if we would like to?

    As you say, nobody knows.
    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 Sunshine's Avatar
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    Well, they do great harm to a handful of people.

    And they reduce your response to vaccines, so that could create harm.

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    I'm 71. I've said this before: One of the worst decisions I've made in life was to stop Betaseron. After 15 years of no exacerbations, and at age 61, the doctor suggested the premise presented here. I stopped...And was good for another couple of years...then all.the various problems rose, leaving me in the situation i am in right now: dependent on care, unable to dress myself, unable to drive, with a colostomy, a catheter, unable to get in,or out of bed, etc. Could it have happened while on the Betaseron,? Maybe. All I can say is that I am n much worse condition now than I was...

    Sundhine, can you point me to a study about vaccines and how they interact with ms treatment? I've not seen that anywhere that I remember.....

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    Distinguished Community Member Sunshine's Avatar
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    Here is the link, Cat
    https://www.medpagetoday.com/meeting...468d0r7095110u

    BTW, love the typo Sudhine! I think that’s my cousin from India on my dads side...

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    Distinguished Community Member Cherie's Avatar
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    My first hospitalization with what we now know to be MS was at age 23. I was not diagnosed until 42 and not offered a DMT till 49. At 51 I changed to a higher dose of the med I had been taking and turned things around eventually shedding the scooter and canes and catheters. With lifestyle changes, I have been able to maintain a fairly healthy active existence. However, every time I have gone off DMTs, I have relapsed within a matter of 3-7 months and ended up in worse shape. Dr. Coyle, referenced in the article above, spoke with us last year at the Consortium about this very topic and at that time she said that she will consider stopping DMT in an older person if they initiate the conversation AND if they have been relapse free with no MRI changes for a period of 6-8 years. Otherwise, she is "not generally comfortable" with stopping med.

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    Distinguished Community Member agate's Avatar
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    Interesting that Dr. Coyle lets the patient initiate the conversation about stopping a DMD. Both times I stopped (Avonex, then Copaxone), I brought up the topic. The neuro never mentioned it as a possibility though when I brought it up, he had no problem with my idea about stopping it and thought my reasons were valid.

    But this news about Dr. Coyle underscores something I've been noticing--that when we see doctors, much depends on what WE as patients bring up. The doctors are waiting for us to present them with the problems we think worth discussing--and in the limited time available, we had better be very careful about what we decide to talk about because that is our big chance to have our problems addressed.

    I used to just "go to the doctor" and let the conversation take whatever course it was going to take. Since then I've wised up and realized that I can control that conversation in many ways and am not acting in my own best interest if I go in there without thinking about what I'm going to say in advance.

    So it looks as if many neuros believe that since not everything is known about these disease-modifying drugs, most people with MS should be on one of them just because it MIGHT help, and anyway it's the best they have to offer at present.

    I had a notion that that was the way they really felt but this remark by Dr. Coyle pretty much clinches it.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    My new Neuro told me that sometime a Neurologist or his assistant might just broach the subject to see how dedicated the person is to staying on their medication. He said that so many people do not take their meds as they should or just get tired of giving a shot or whatever and do not stick with it.

    He brought this up to me when we were discussing how long I have been on Rebif. I do not believe that I personally (not everyone) would be still sitting here typing this if I had not gotten on a DMT and stayed with it. For one thing, I was having eye problems, off and on attacks of optic neuritis and the drugs stopped that. Also my gait was getting so bad that I was going toward not being able to walk at all. The drugs did not stop that, but I believe it slowed it to the point that I have remained able to drive, mostly keep a house up, grocery shop and do things to keep independent. I believe that the drugs are the reason I was able to work part-time the last ten years that I worked. But that was just me.

    Again, they do not know, and I believe that. However, I remember when I told my Neurologist that retired that I did not want to take a certain drug and felt I was too old, he asked me what my age had to do with an MS drug. Sometime I think about that.
    Virginia

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