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    Treatment Inertia?

    Each year, I seem to struggle with the possibility of "treatment inertia?"

    This is when, despite "better treatments" you stick with your current treatment. I don't know if it pertains to me, but sometimes I wonder?

    I'm curious, why do most folks switch MS txs? Obviously, I think "MRI changes, disability progression, etc., but does anyone switch because something "new" comes along? But is "new" "better?"

    I was dx in 1994 (age 26), started Avonex September 1997 (age 29), and remain on it today. Although I've had a few minor relapses (2003; 2007) my MRI's remained stable. And my neuro always said "stay on Avonex" to me after reviewing my MRI's etc.

    As I'm now in my early 50's, I wonder if it's simply age that is making me feel worse (increasing fatigue & cognitive dysfuntion)? Despite stable MRI's, how many folks have switched tx's? But, is the devil you know better than the devil you don't? Meaning "comfort, stability, usual side-effects, long safety profile, etc."

    My usual neuro retired, new neuro said if we see any changes on new MRI, I recommend switching to Ocrevus. MRI=no changes (stable in lesion size and number when comparing 2004 MRI to 2018 MRI). Wow, that's a long time, huh? Perhaps, I need to quit "over thinking things" and be "grateful"?

    Anyone here want to share their experiences. . . . .happy holidays!
    Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

    #2
    I did switch to Tysabri from Rebif with stable MRIs. I had minor flares, but no MRI change. But the fatigue was getting worse and I was feeling worse.

    I didn't realize how bad I had felt from 6 years of Avonex and Rebif until after I went off. I felt so much better on Tysabri.

    I had asked my neuro about Ocrevus, clearly out of convenience of less infusions. We agreed that since I was MRI and mostly symptoms stable, why chance it. So I stayed on Tysabri. We left it if MRI changes or I progress, then we would revisit.

    Here's hoping no changes for you.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Originally posted by dm0329 View Post
      Each year, I seem to struggle with the possibility of "treatment inertia?"

      This is when, despite "better treatments" you stick with your current treatment. I don't know if it pertains to me, but sometimes I wonder?

      I'm curious, why do most folks switch MS txs? Obviously, I think "MRI changes, disability progression, etc., but does anyone switch because something "new" comes along?... But, is the devil you know better than the devil you don't? Meaning "comfort, stability, usual side-effects, long safety profile, etc."
      Most folks switch when their present med is not controlling MS, especially reflected by lesions on MRI.

      "Is the devil you know better than the devil you don't?" Yes, IMO, if progression is largely under control.

      Please know that MS progression, unfortunately, continues rather like a slow burn on all of the MS DMTs; Higher 7 or 10 tesla MRIs see damaging occuring in MS that standard 1.5t and 3t MRIs do not see.

      The combination of aging and slow MS progression is what many face. W/O MS, aging sucks, if you don't believe so, just wait.

      IMO, there are currently few, if any, MS DMTs to consider if you remain stable what you are using. Perhaps, in time a new med will be approved which is demonstrably more effective, is safer, and has fewer side effects. There are at least two such DMTs in trial which may provide that opportunity. They are probably 5 years out, if trials go well. But that is why we have trials... proof which helps inform treatment decisions.

      Best wishes and Happy Holidays!

      Comment


        #4
        I was on Avonex for several years. As soon as Tysabri was approved I went off Avonex. As Pennstater said, I didn’t realize how bad Avonex made me feel until I stopped.

        My MS is primary progressive so there were no relapses. My neurologist felt that Tysabri gave me a better chance to slow the progression.

        Comment


          #5
          Originally posted by kmallory1 View Post
          I was on Avonex for several years. As soon as Tysabri was approved I went off Avonex. As Pennstater said, I didn’t realize how bad Avonex made me feel until I stopped.
          The responses by pennstater and kmallory1 prodded my thinking... both halted Avonex and felt better. I believe there is solid evidence supporting that would be the case with most people taking Avonex.

          The next observation is that Tysabri did not make them feel as crappy as Avonex. My wife concours; so that makes 3 people. She was on Avonex briefly when Tysabri was off market in late 2005.

          The next immediate question is... would halting Avonex make much of a difference in controlling MS? Possibly, possibly not. What we do know is that it makes very little difference relative to disability progression. In fact, beyond age 54, I have yet to see hard evidence Avonex makes any difference at all relative to disability progression.

          Treatment decisions are deeply personal and individually tailored. That said, I suppose those who are less risk averse might stop Avonex after a certain age and see if it matters, for better or worse. There are some DMTs which present huge potential problems going cold turkey and doing so is not wise, IMO. Avonex would not be one of those.

          Not sure how this will be received but it is part of the conversation discussing MS DMTs...

          Dr. George Ebers, neurologist, MS researcher, Head of Clinical Neurology, University of Oxford, speaking...

          https://www.youtube.com/watch?v=i0m_...ture=emb_title

          Comment


            #6
            Thanks!

            Thanks to all for your feedback!

            Especially enjoyed the "Living Proof" clip about the pharma companies "cooking the books" years ago with interferon tx data. Sheesh! Now, I have motivation to stop interferons by age 65! A Pincushion No More! LOL Overall, I am "grateful" that my MRIs have been stable the past 14 years (only one small flare in 2007 left side numbness --- optic neuritis in 2003 but MRI compared to 2018 scan was dated 2004).

            Back in 1994, Betaseron was on a lottery, and I was 26 and just dx. My neuro said "young women" tend to do well with MS. To basically, "live my life" blah blah blah. . . In 1997, I had left-side lower quadrant blind spots in my line of vision (thalamus lesion). Went back to neuro, new MRI (1997-1994), showed drastic "silent progression." Neuro said I was lucky three times and to start Avonex as soon as possible!

            Fear is a great motivator! Twenty two years later, "I still look so good" (damn how I hate that saying too!), I wrapped up my BS and earned my Master's degree while working full time and fell into a career I loved. Fatigue and cognitive issues forced early retirement, but I am "grateful" for any help Avonex has given me along my journey.

            Again, thanks to all for your feed back! Happy Holidays!
            Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

            Comment


              #7
              Thank you

              MyOak,

              Appreciate the link and can understand your note "...Not sure how this will be received..."

              I'm angry even though somehow, I knew as much. Still amazed how people prey upon others.

              As dm0329 said "Fear is a great motivator!"

              Thanks again MyOak.

              Jer

              Comment


                #8
                The idea that DMT's are most effective during the inflammatory stage to prevent relapses, and not so effective when the MS progression is driven more by neurodegeneration (with less inflammation) is certainly not new.

                That was discussed with me by Cleveland Clinic neuros (Mellen Center for MS) many years ago.

                Take Care
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Originally posted by KoKo View Post
                  The idea that DMT's are most effective during the inflammatory stage to prevent relapses, and not so effective when the MS progression is driven more by neurodegeneration (with less inflammation) is certainly not new.

                  That was discussed with me by Cleveland Clinic neuros (Mellen Center for MS) many years ago.

                  Take Care
                  For those whose disease stage is nearing completion of the inflammatory phase it calls into question how to balance the risk and reward of a DMT. All of the approved DMTs primarily address the inflammatory phase; not the degenerative phase. How do we properly value a DMT's diminishing effectiveness against the adverse side effects which are almost certain to get worse with age?

                  That balance of competing values is where I'm at presently in attempting to find the best way forward for my spouse.

                  With Ocrevus the added kicker is that constantly taking Ocrevus constantly suppresses the immune system a good deal more than other effective DMTs. Ocrevus kills selected B cells (CD20) while Tysabri and Gilenya do not, Tysabri blocks them from getting into the CNS and Gilenya sequesters them in the lymph system.

                  Therefore, it takes an Ocrevus patient much, much longer to re-populate B cells... several months at minimum, and in about 5% of those having depleted CD20 B cells it takes 4 years or more to re-populate them.

                  Obviously, keeping the immune system severely suppressed for years means it has diminished ability to fight infections of all kinds; cancers, too. How could that turn out in the long run? Possibly, not well at all, and perhaps, not well in the short run, either.

                  So, if I am at a stage or age where I am getting limited effectiveness from my DMT would it be wise to forgo it and normalize my immune system, which overtime, I will surely need for the best chance at good health?

                  Of course, it isn't just my household contemplating this issue; many are and many have.

                  There is value in verbalizing our deliberations because we are learning and by learning, we can arrive at the treatment decision best for our self and settle our soul in doing so.

                  Comment


                    #10
                    Originally posted by Myoak View Post
                    For those whose disease stage is nearing completion of the inflammatory phase it calls into question how to balance the risk and reward of a DMT. All of the approved DMTs primarily address the inflammatory phase; not the degenerative phase. How do we properly value a DMT's diminishing effectiveness against the adverse side effects which are almost certain to get worse with age?

                    That balance of competing values is where I'm at presently in attempting to find the best way forward for my spouse.

                    With Ocrevus the added kicker is that constantly taking Ocrevus constantly suppresses the immune system a good deal more than other effective DMTs. Ocrevus kills selected B cells (CD20) while Tysabri and Gilenya do not, Tysabri blocks them from getting into the CNS and Gilenya sequesters them in the lymph system.

                    Therefore, it takes an Ocrevus patient much, much longer to re-populate B cells... several months at minimum, and in about 5% of those having depleted CD20 B cells it takes 4 years or more to re-populate them.

                    Obviously, keeping the immune system severely suppressed for years means it has diminished ability to fight infections of all kinds; cancers, too. How could that turn out in the long run? Possibly, not well at all, and perhaps, not well in the short run, either.

                    So, if I am at a stage or age where I am getting limited effectiveness from my DMT would it be wise to forgo it and normalize my immune system, which overtime, I will surely need for the best chance at good health?

                    Of course, it isn't just my household contemplating this issue; many are and many have.

                    There is value in verbalizing our deliberations because we are learning and by learning, we can arrive at the treatment decision best for our self and settle our soul in doing so.
                    Good luck with your considerations and deliberations Myoak, and to all those who are contemplating these similar issues.

                    Take Care
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      Originally posted by dm0329 View Post
                      Each year, I seem to struggle with the possibility of "treatment inertia?"

                      This is when, despite "better treatments" you stick with your current treatment. I don't know if it pertains to me, but sometimes I wonder?

                      I'm curious, why do most folks switch MS txs? Obviously, I think "MRI changes, disability progression, etc., but does anyone switch because something "new" comes along? But is "new" "better?"

                      I was dx in 1994 (age 26), started Avonex September 1997 (age 29), and remain on it today. Although I've had a few minor relapses (2003; 2007) my MRI's remained stable. And my neuro always said "stay on Avonex" to me after reviewing my MRI's etc.

                      As I'm now in my early 50's, I wonder if it's simply age that is making me feel worse (increasing fatigue & cognitive dysfuntion)? Despite stable MRI's, how many folks have switched tx's? But, is the devil you know better than the devil you don't? Meaning "comfort, stability, usual side-effects, long safety profile, etc."

                      My usual neuro retired, new neuro said if we see any changes on new MRI, I recommend switching to Ocrevus. MRI=no changes (stable in lesion size and number when comparing 2004 MRI to 2018 MRI). Wow, that's a long time, huh? Perhaps, I need to quit "over thinking things" and be "grateful"?

                      Anyone here want to share their experiences. . . . .happy holidays!
                      Good question.

                      I've been on Copaxone since 2008. In response to your question, I guess the reason, for a lot of years, that I didn't switch is that my MS Specialist said that if a med seems to be working, it's probably best to stay on it. I second reason is that the potential side effects of some of the newer meds scare me. Is the devil you know better than the devil you don't? Maybe.

                      Three or four years ago (I'm 57 now), I did begin to notice a decline. At that point, she suspected that the decline was related to transitioning to SPMS. Perhaps I would have begun asking questions about a possible switch (although the side effects are still worrisome to me!), but after beginning some dietary and lifestyle changes, I've been stable the past 18 months or so.

                      I did make a switch in 2008, after 5 years on Betaseron. It wasn't effective for me; I wish I would have switched sooner.
                      ~ 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.

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