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After age 65, continue or de-escalate DMT?

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    After age 65, continue or de-escalate DMT?

    I wonder what other's are doing (hearing, reading, etc.) on continuing DMT's after age 65? How many folks are maintaining their CRAB txs afer age 65? Or did you switch tx when others came out? Descalation: Folks switch from Ocrevus or other highly suppressive txs, in their 60's (perhaps to Aubio or other txs?)

    I'm on Avonex (22+ years; dx 25 years ago) so I'm blessed that we have so many tx options today. Although my MRIs have been stable (and very slow progression, age or MS?) I continually wonder what recommendations are out there and what my fellow MSers are doing?

    My usual neuro retired (stable MRIs always said stay on Avonex) and new neuro said switch to Ocrevus if any MRI changes. New neuro compared one of my oldest MRIs (2004 to newest 2018) and there weren't any changes. Stick with Avonex as I'm just turning 53, right?

    But should I continue tx even though "not as effective" so I wont have to "de-escalate" later? I know, these are more rhetorical questions than cut and dry ones. Simply looking to start a conversation and gather others feedback.

    Thanks, as always, for your input!
    Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

    #2
    Originally posted by dm0329 View Post
    I wonder what other's are doing (hearing, reading, etc.) on continuing DMT's after age 65? How many folks are maintaining their CRAB txs afer age 65? Or did you switch tx when others came out? Descalation: Folks switch from Ocrevus or other highly suppressive txs, in their 60's (perhaps to Aubio or other txs?)

    I'm on Avonex (22+ years; dx 25 years ago) so I'm blessed that we have so many tx options today. Although my MRIs have been stable (and very slow progression, age or MS?) I continually wonder what recommendations are out there and what my fellow MSers are doing?

    My usual neuro retired (stable MRIs always said stay on Avonex) and new neuro said switch to Ocrevus if any MRI changes. New neuro compared one of my oldest MRIs (2004 to newest 2018) and there weren't any changes. Stick with Avonex as I'm just turning 53, right?
    Good to hear you are doing well with Avonex. I've switched treatments several times, but because they were not keeping me stable or had severe reactions to them.

    Originally posted by dm0329 View Post
    But should I continue tx even though "not as effective" so I wont have to "de-escalate" later? I know, these are more rhetorical questions than cut and dry ones. Simply looking to start a conversation and gather others feedback.
    You seem to be doing well on your current treatment, so I wouldn't assume it's "not as effective" as another treatment would be for you right now. I wouldn't consider switching disease modifying treatments just for the sake of possibly "de-escalating" later in life.

    I am also in my 50's, and haven't even thought of having this conversation yet with my MS Specialist. Too many things can happen by the time I'm 65. But I do know of others 65+ who take one of the CRAB drugs or other disease modifying treatments, including Tysabri and Ocrevus.

    A lot can happen in twelve years. I hope your MS remains stable. There will be undoubtedly be even more treatment options available as well. Hopefully, much better ones!

    Best wishes
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #3
      I'm 57. I initiated this conversation with my MS specialist at my November wellness check.

      I've been on copaxone with mostly success since since 2008. No MS flares since 2014, and they were fairly minor. My February 2018 MRI showed 3 new lesions since 2013, which we both believe likely occurred during my two 2014 flares. We both also believe that it is likely that I am currently in SPMS.

      Dr Lynch plans to do an MRI at my next appointment, in May, to confirm that I've had no new lesions since 2018. If all looks good, she'll take me off copaxone and follow up with one MRI in six months, and an annual MRI for four years, to follow me and see that there are no new lesions developing.

      I'm hopeful that the dietary and lifestyle changes that I'm making will continue to keep my MS stable, even if I go off my DMT.

      Prior to beginning my functional medicine doctor's protocol, my copaxone, although keeping flares away, was not stopping my decline. My diet and lifestyle have seemed to halt it better than copaxone.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #4
        I've been on Tysabri since 2006 when I was 58 years young. My Dr wanted me to stop tx a few years ago. I said "if it ain't broke, don't fix it". So, I'm still on Ty and holding my own.
        Linda

        Comment


          #5
          I'm with lindaincolorado on this one. I'm approaching my 10th anniversary on Ty and stand at 111 infusions to date. I have moved to extended dosing (49 days) and am doing well.

          Another earlier thread (I believe in this forum) was discussing the same thing. A 72 year old woman posted that she did quit her DMD and went on to have a relapse at 72. Nope. Not giving up on Ty. If it ain't broke, don't fix it!

          Comment


            #6
            "After age 65, continue or de-escalate DMT'

            Really a great conversation starter because it is a question virtually all pwMS on a DMT will face at some point.

            Risk - Reward balance with MS DMTs is possibly the most nuanced of any disease in existence. Individually, there are a ton of unique factors involved and as always with MS, one size decidedly DOES NOT fit all. But it is helpful to hear from each individual MSer how they approach the excellent question presented.

            "if it ain't broke don't fix it" is very sound thinking, I believe. If someone is having good or great results on an effective DMT and suffering little or no side effects (as has been the case with the great majority of folks I have known personally taking Tysabri) then continuing that course seems prudent.

            At least two people here have recently mentioned they didn't realize how crappy they felt on Avonex until they stopped taking it and went on Tysabri. So, two factors... the first is how crappy they felt with Avonex and the second is how much better they felt on Tysabri. My spouse, btw, agrees with that assessment.

            However, what if she and they had only stopped taking Avonex? Would they have felt less crappy even though MS had the chance of becoming more active? No one knows for sure. I tend to take a mathematical probability approach to much of my thinking and comment about MS DMTs and issues around them. So, with that in mind, I express my opinion as follows...

            I believe there is a high probability that most people taking Avonex would feel better not taking it because of the crappy side effects. But would their MS get worse if they stopped? Some may, especially younger than age 55 patients. Trials typically have an age cut off of 55 so we have little evidence, sometimes none, of effectiveness over age 55 in most MS DMTs. Please do not believe for a moment that the age cut-off is random; such thinking is terribly naive. Drug companies want their drug to look as good as possible so they omit populations which are likely to show decreasing effectiveness.

            The sparse effect most MS meds have in those younger than age 55 seems to disappear gradually over age 55 from what I understand. And, concerning disability progression, there is no evidence I have seen the CRAB drugs have much, if any, benefit regarding disability progression at any age.

            If you feel crappy on a CRAB drug while it has minimal impact on MS... well, I can understand why some people stop... they want to feel better. Certainly, over age 65, they could easily stop for a year to see how they felt and the very high probability is that stopping would have no effect on their MS. Likely, they would feel better minus the crappy side effects.

            An interjection here... the things Mamabug and others do... exercise, diet, etc. are in my opinion, likely to have as much effect, or more, than the CRAB drugs and certainly only help those who are taking CRAB drugs in combination with those things.

            Also, I'm a fan of LDN, ALA, and EGCG (not overdone with drinking green tea being the best form of EGCG). My guess is that those 3 things are more beneficial in MS than any of the CRAB drugs. I would love to see those 3 things trialed against CRAB drugs. IMO, all the CRAB drugs would largely disappear after that trial.

            But what about MS DMTs beyond the CRABs? Are there good reasons to continue taking them? Yes, I believe so. Tysabri has proven it preserves hand and arm function in SPMS. Most RRMS transitions into SPMS at some point in age and if/when you get there, if you are not walking as well you sure as heck want your hands and arms to work well.

            Effective meds likely delay the transition from RRMS to SPMS, as do other things. Smokers, for example, transition to SPMS 7-8 years sooner than non-smokers, according to Sweden's national registry of MSers.

            In conclusion, IMO, after age 65 most could stop CRAB drugs, experience no difference in MS and feel better minus those DMTs. But those having success on an effective DMT could very well benefit from continuing. JMHO.

            Comment


              #7
              Just wanted to expound on my ms journey. I have exercised most of my adult life. I have done it in the water for 12+ years and rode a 3 wheel bike till 2011. Since 2011 I have taken water aerobics, the last couple added aqua zumba. I have been a pescatarian (vegetarian + fish ) for approx 5 years. I have put forth the effort to maintain a healthy lifestyle. This is along with the blessings of Tysabri.

              I want to do everything I can to keep this lousy dis-ease at bay !

              Linda
              Linda

              Comment


                #8
                Similar story

                We have similar stories. I am 51, diagnosed at 29. I was on Avonex for 21 years. While my symptoms very slowly were escalating, my MRIs were stable so my neuro felt no need to change meds. In addition, my neuro felt that I could almost certainly stop Avonex when I hit 55.

                Then I had what may or may not have been a relapse and when my neuro failed to return my calls, I felt I had no choice but to find a new doctor. I learned that my first doctor had not ordered certain MRIs in years (decades actually) and my new neuro, hearing my story, switched me to Tysabri. She said "hell no" when I asked about stopping drugs at 55.

                I cannot say I felt much different after changing from Avonex to Tysabri. Less leg pain but that could have been a coincidence of timing. I will only be on Tysabri for one more year, then I will need to move on to something else.

                My feeling is different doctors have different approaches, which leads me to feel there is no one right way to go. My current doctor is clearly much more aggressive than my previous one. I have not found Tysabri to be the magic bullet however, and I admittedly am disappointed that DMTs clearly will be part of my life for many more decades.

                At 51, there really isn't a decision to make and so I muddle through. Theoretically I am stable, but my symptoms are increasingly problematic. Still, I know in the grand scheme I am lucky. I trust my new doctor. And on I go...

                Comment


                  #9
                  Thoughts on deescalation

                  When your doctor says your MRI is stable, is he/she measuring atrophy? I would feel much more comfortable about staying on avonex if you could show atrophy was normalized.

                  Also, I had no relapses or new lesions on my MRI for 5 years on Copaxone. I finally just stopped taking it. 18 months later my MRI showed 4 new lesions, one on my brainstem! I was 58.

                  That totally wasn't worth the risk of giving up the medication. I will never go off my medication completely again. As some neurologists point out, an attack in your 60s or 70s is much harder to bounce back from than an attack in your 30s.

                  That said, I'm on Ocrevus right now but probably don't want to stay on it forever. My doctor and I expect to de-escalate in my mid-60s.

                  Comment


                    #10
                    I Made the Risky Choice

                    I was on Aubagio since my dx. I was dx at a later age (60) and since then had no new lesions or flares. The medicine however made me sick. I had stomach issues so much that I lost 40 pounds. I had terrible balance and dizziness along with just feeling sick. I quit the medicine over 2 years ago. I have felt much better and appear much better to my family. I can walk without a cane now and my stomach issues have pretty much resolved. I don't feel sick every day.

                    I can tell you that I was very scared at first and sometimes I still feel nervous about my decision. Everyone has to decide for themselves what to do and be prepared for whatever comes after. I hope that I won't regret stopping the DMT but for now I am happy that I did it.

                    Comment


                      #11
                      Originally posted by Mable View Post
                      When your doctor says your MRI is stable, is he/she measuring atrophy? I would feel much more comfortable about staying on avonex if you could show atrophy was normalized.
                      I think the "stable" comment referred to no new lesions, but honestly I'm not sure. It's a good question. My symptoms were creeping however, so my new doctor didn't consider me stable regardless, hence the change to Tysabri.

                      I see her next week. I'm curious what she'll recommend next.

                      Comment


                        #12
                        De-escalation seems to be an epidemic that is spreading like wildfire. They got rid of all of the opioids so now every medication is under attack.

                        I am 67 and my neurologist brought up the subject during our telemedicine visit. I told him I want stay in course. I believe the Tysabri is preventing me from peril 4 weeks at a time. They tried six weeks and it didn’t go so well.

                        Strangely, when I wanted to try Ocrevus they said there would be too much risk of a flare.
                        Seems contradictory to me. I’m staying on Tysabri. If they come up with a drug to reverse MS count me in.

                        Comment


                          #13
                          Originally posted by dm0329 View Post
                          But should I continue tx even though "not as effective" so I wont have to "de-escalate" later? I know, these are more rhetorical questions than cut and dry ones. Simply looking to start a conversation and gather others feedback.
                          I'm age 58. I've had MS since 2002, was diagnosed almost 2 years later. I was on Betaseron for about 5 years; it was always somewhat ineffective for me.

                          I was on Copaxone for 12 years. It likely did what it was intended to do -- less frequent and less severe flares and slowed progression. But, I continued to progress. I went on disability in 2008, about the same time I switched from Betaseron to Copaxone.

                          Since 2014, I have had no flares; but since 2016 or so, my progression seemed to accelerate. My MS Specialist and I suspected I was in SMPS by then. Following an MRI this summer that showed no progression since most recent previous MRI, I went off Copaxone.

                          I'd been fairly stable since beginning protocol similar to Wahls Protocol in summer 2018 until COVID started. I've decreased exercising a lot since then and I suspect that has contributed to declining again. But, I believe that Copaxone was no longer effective for me and I'm glad to be off of injections after so many years.
                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                          .

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                          Comment


                            #14
                            My neurology practitioner mentioned that in a way that did not leave room for me to take no for an answer. I didn’t go over so well.
                            Age 65 is very arbitrary. Being secondary progressive does not necessarily mean the DMTs are not working.

                            I will put my foot down as long as I can. If I can’t I will move on to another doctor.

                            Tysabri stays!

                            Comment

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