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Thread: Dr. said no more ms drugs

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    Default Dr. said no more ms drugs

    Hi I used to be on this board a long time ago. I was diagnosed in 2003 after five years of craziness! I am 59 yrs old, or should I say young depending on the day! I went to see my neuro this month and she told me I could go off my copaxone. She stated I have not had anymore lesions for at least 10 yrs. She also stated that when you reach 60 or so the disease can go dormant for good. I was always the is it or isn't it person. Has anyone ever heard of this? I had another MS neuro, from an outstanding hospital, wanting to take me off a few years ago, but I wasn't ready.

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    Distinguished Community Member SalpalSally's Avatar
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    Hi Sicialianmama, nice to meet you and Welcome back.
    I'm 70s and haven't been on a DMD for years. Only on LDN for
    the last 10+ yrs and doing OK. What the Doc says is true, if you
    are SPMS and at a plateau, your need for a DMD is greatly diminished.
    Love, Sally


    "The best way out is always through". Robert Frost







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    Quote Originally Posted by SalpalSally View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Sicialianmama, nice to meet you and Welcome back.
    I'm 70s and haven't been on a DMD for years. Only on LDN for
    the last 10+ yrs and doing OK. What the Doc says is true, if you
    are SPMS and at a plateau, your need for a DMD is greatly diminished.
    Thanks SalpalSally

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    Hi Sicilianmama, I remember you.:)

    We have discussed here (or elsewhere) that several docs have told this to patients. No one could find anything in writing or a position paper on this matter from any group.

    I am on Copaxone and haven't had any new lesions in 7 years and no exacerbations since I have been on DMD's - almost 20 years. I am walking well and further. I believe the Copax is working. Until I run out of a place to inject, I am not making any changes.

    It is hard to know, isn't it?
    ANN
    There comes a time when silence is betrayal.- MLK

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    Distinguished Community Member SalpalSally's Avatar
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    Yes Ann, just more proof that, everyone's MS is Different.
    Some Docs/Neuros don't buy that.
    Love, Sally


    "The best way out is always through". Robert Frost







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    Distinguished Community Member agate's Avatar
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    Hi sicilianmama,
    Your name is certainly familiar--welcome back!

    When you say

    I went to see my neuro this month and she told me I could go off my copaxone. She stated I have not had anymore lesions for at least 10 yrs. She also stated that when you reach 60 or so the disease can go dormant for good. I was always the is it or isn't it person. Has anyone ever heard of this?
    I've run across this idea occasionally but it's by no means settled. A lot seems to depend on whether your MS has become SPMS, and that can happen at any age.

    There was this discussion between a couple of neurologists who are active in MS research:


    From a Continuing Medical Education activity called "Achieving Optimal Outcomes for Patients with Multiple Sclerosis" and sponsored by the PeerView Institute and the University of Florida College of Medicine (May 29-June 1, 2013).

    Drs. Timothy L. Vollmer and John N. Corboy are both professors of neurology at the University of Colorado School of Medicine and co-directors of the Rocky Mountain MS Center at the Anschutz Medical Campus in Aurora, CO.

    From the "Faculty Q & A" section of the presentation:

    Quote:
    What is the evidence that continued disease-modifying therapy for secondary progressive disease does or does not... reduce ultimate disability, or is there any evidence of the ultimate disability of secondary progressive MS when continuously treated with any of the DMTs, and is there any evidence based on MRI data or clinical data on this?


    Dr. Vollmer:

    So the issue here is, I think we're thinking about it in the wrong way. If you look at the studies, take the interferon beta trials. There's the European trial and there's the North American trial [Kappos L et al. Neurology. 2004;63:1779-1787]. The fundamental difference between those trials was the age of the patients. The patients in the European trial tended to be younger and had very active disease, were in the progressive phase of disease. We saw a clear effect of interferon beta-1b in that population.

    In the North American population, we did not see it in the overall effect, but they were about 6 years older, and in fact, we had already culled all the active patients out, because at that time we were already convinced that treating inflammation was important.

    So the issue is not whether you're called secondary progressive or relapsing-remitting. The issue is, are you still in the inflammatory phase of the disease as measured by relapse rate, as measured by new MRI lesion activity, as measured by rapid progression of disability, and as measured by age? Basically, if you're less than age 55, you're very likely to still be in the active phase of the disease, and therefore you can benefit from the therapies.

    The second issue is that your expectation in secondary progressive disease needs to be realistic. You're not going to make these patients better. The best you can do is slow down the rate at which they get worse.

    Neuroplasticity, unfortunately, also decreases as a function of age. So you've got brain volume, and the double-whammy with your plasticity going down, and that, combined with loss of cognitive reserve and neural reserve, explains why in our older patients that have already got fixed disability and are progressive we cannot expect that the therapeutic goal should be to make them better.

    Dr. Corboy:

    And I guess I would just add one other thing that what is greatly missing is the opposite question. If you take patients off medications at, say, age 60—just to pick a number out—who have secondary progressive MS or, for that matter, primary progressive MS, is there any data that that is dangerous?

    And the answer to that is no, we don't have any data that taking people off these medications is dangerous at that point in time, and that would be one way to determine actually what the ongoing effect would be for those patients.

    So I think the real answer is, it's difficult to show over a prolonged period of time that there is a delay in patients going into secondary progressive disease. There are fewer patients who go into secondary progressive disease who are actually measuring the effect. But I would otherwise agree with everything that Tim said.
    Dr. Vollmer: And the second question was, have you seen relapses in patients over the age of 60?

    Yes, I've seen them in 70-year-old patients. So, again, each patient's individual. That's
    why we have to develop better strategies to really be specific about our goals.

    Dr. Corboy:

    And to add to that, the age issue is partially age and partly onset of disease. So I saw a patient around Christmas, onset of disease age 65, typical relapsing MS. At age 70, she had an acute attack with three enhancing lesions. So for her, everything was sort of frame-shifted down based less on age and more on disease duration. So I think there's still a wide variation.
    There's also this study of MS in those over 75:

    http://registration.akm.ch/einsicht.php?
    XNABSTRACT_ID=116028&XNSPRACHE_ID=2&XNKONGRESS_ID= 126&XNMASKEN_ID=900


    This study indicates that MS can enter the secondary progressive phase even 50 years after onset:

    http://registration.akm.ch/einsicht....NMASKEN_ID=900

    And there was this:

    From PubMed, June 2008:

    Quote:
    J Neurol Neurosurg Psychiatry. 2008 Jun 5

    Relapses in multiple sclerosis are age and time-dependent

    Tremlett H, Zhao Y, Joseph J, Devonshire V.
    University of British Columbia, Canada.

    OBJECTIVES:

    To examine the relative relapse-rate patterns over time in a relapsing-MS cohort and to investigate potential predictors of relapse-rates and periods of low-relapse activity.

    METHODS:

    This retrospective cohort study followed 2477 RRMS patients from onset to July 1, 2003. Annualized relapse rates were examined according to sex, age at onset, the patient's current age and disease duration. The relationship between relapse-rates and baseline characteristics (sex, onset age and onset symptoms) were examined using Poisson regression. Time to the first 5-years relapse-free was examined using Kaplan-Meier survival analysis.

    RESULTS:

    The mean follow-up time (from onset of MS symptoms) was 20.6 years, during which 11,722 post-onset relapses were recorded. The relapse rate decreased by 17% every 5 years (between years 5 to 30 post-onset), but this decline increased in magnitude with increasing onset age. Women and those with onset sensory symptoms exhibited a higher relapse-rate (p<=0.001). Over three-quarters of patients (1692/2189) experienced a 5-year relapse-free period during the RR phase.

    CONCLUSION:

    Relapse rates were age and time-dependent. Our observations have clinical implications: 1) any drug able to modify relapse rates has the greatest potential for a population-impact in patients <40 years old and within the first few demi-decades of disease; 2) continuation of drug beyond these times maybe of limited value; 3) long-term follow-up studies must consider that relapse rates likely decline at different rates overtime according to the patient's onset age; 4) a relapse-quiescent period in MS is not uncommon.

    PMID: 18535026
    I was on Avonex for 3 years, then Copaxone but I stopped taking it a couple of years ago and now am on nothing. I didn't think there was much evidence that these drugs would help someone my age (I'm 73 now) or someone with SPMS for as long as I've had it (since the late 1970s, diagnosed in 1980).

    Offhand I'd say that my MS hasn't gone dormant. It's very very slowly getting worse. At least it's slow.
    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 SuzE-Q's Avatar
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    Great info, agate, thanks!

    We also have the experiences of BT members such as Cat who went off long term meds (beta) because of long time stability and age, and ended up having a major exacerbation. So, it may be up in the air whether both stability and age is any predictor of a benign course following cessation of treatment. Difficult choice!

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    Distinguished Community Member Lazarus's Avatar
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    Default I never show enhancing lesions

    I am SPMS and 65 years old. I am a farmer and work all the time and work hard.

    I have done DMDs since 1994..whenever Betaseron first came on the market. I then moved on the several chemo drugs and am currently on Rituximab. I show many symptoms which are managed with meds. Recently I had an episode that landed me in th hospital for two days. My symptoms resolved and now are part of the routine, showing up when I have worked too much.

    So, I am old, have no enhancing lesions and have what I can only call a flare and am still on rituxan (JC virus positive). When my meds wear off symptoms emerge one by one and problems are resolved by taking the meds we work with.

    Vollmer was the first one who wanted to switch me to chemo after years on DMDs and I am still moving around!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Thanks for the info! I remember Cat, and Ann! It is so confusing, I guess there is no exact science when it comes to this disease. I have had NO new lesions since 2004. I have milder ms, and autonomic dysfunction. I also have elevated IgG anticardioliphids. I have had ms neuros from major hospitals tell me yes ms, not typical. I told her I want an Mri in 6 months just to make sure. Because I have had two neros tell me I could stop I guess I have to trust them! It is a little scary though!

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    I see someone has already told you about me. I greatly regret going off Betaseron a few years ago. After going off the drug I started to decline. This accelerated in 2012, and in April of this year I experienced a severe exacerbation, and have been ill ever since. I was in and out of the hospital, in and out of rehab, dealing with visiting nurses, physical therapy, drugs up the wing-ding, threats of being incarcerated in a nursing home, barely able to manage.

    It was my doctor who encouraged me to go off the Beta, making the kinds of comments you related. I have had MS for 30 years,

    Now I am on Tecfidera, one of the newest oral meds. I haven't seen any particular difference, but I won't go off the drug again.
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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