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    Copaxone long term for MS or CIS?

    A lot of people on this board seem to hate on this medicine... is it really that bad of a drug? I see it as something with very few side effects and amazing copay assistance. When I was talking about meds this was my top choice by far... I mean flu like symptoms , immune suppression , hospital stays , not great assistance , and a possible fatal brain infection - (OK this last one could just be from my whole brain tumor false diagnosis but still)

    #2
    Originally posted by Daisycat View Post
    A lot of people on this board seem to hate on this medicine... is it really that bad of a drug? I see it as something with very few side effects and amazing copay assistance. When I was talking about meds this was my top choice by far... I mean flu like symptoms , immune suppression , hospital stays , not great assistance , and a possible fatal brain infection - (OK this last one could just be from my whole brain tumor false diagnosis but still)
    My 0.02.

    Ten years ago, copaxone was the "go to" medication for many neurologists. It was safe, few side effects and Shared Solutions was a patient friendly company. The other injection medications had similar efficacy ratings, but often had greater side effects.

    Tysabri was almost the only other game in town and reserved for more severe cases of MS. Many people were highly wary of the medication because of the possibility of contracting PML.

    In the past 10 years, a number of new medications have entered the marketplace to include oral medications and additional infusion medications. On average, many of the newer medications simply out perform copaxone. Even Tysabri has become a first line medication as we have learned more about the drug and also PML.

    There are different schools of thought when it comes to MS medication selections:
    - no medication
    - start with a lower tier medication and only move to higher tiers as MS progresses
    - start with the higher tiers medications and try to prevent MS from ever progressing

    If you want the most conservative and "safest" medication that would probably be Copaxone. If your goal is to aggressively fight MS then you should look at choices beyond Copaxone. Yes, there are wonderful copaxone success stories, but on average there are medications with higher efficacy levels.

    Today there are basically three efficacy tiers of MS medications with copaxone ranking in the least effective tier. More information can be found here: https://www.msworld.org/forum/showth...omparing-DMT-s


    For me the therapeutic goal should be "No Evidence of Disease Activity" or NEDA. The best chance of reaching NEDA are the more powerful medications. NEDA details can be found here: https://www.mstrust.org.uk/a-z/neda-...sease-activity

    I wish you well...

    Comment


      #3
      Great help Marco.

      Not hating on Copaxone, but I started on Avonex, then Rebif, which are in the comparable efficacy as Copaxone. When I switched to Tysabri, my relapses and progression stopped, one spinal lesion even shrank. So I guess I was pushing change to give yourself the best shot at preventing relapses. I sometimes wonder if I had been on Tysabri from the beginning, would it be different now? But back then, you had to fail on the others before approval for Tysabri. And I will never know that answer. I also have a lower copay on Tysabri than when on Avonex and Rebif.

      That being said, I apologize. Everyone has their own reasons and risk tolerance for choosing a medicine. As long as you research it, look at pros and cons, and make the best educated choice for you, then that is the right choice. The key is to make sure educated decision. If it comes down to cost, talk to the companies and have them evaluate assistance for you.

      Be diligent in getting MRIs as sometimes, new lesions appear without symptoms. So the MRI, along with your symptoms are how to monitor to see if Copaxone, or any DMT you are on, keeps working for you. I hope it does.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        The two biggest things for me that make Copaxone my choice are no immune suppression and amazing copay assistance. I make decent money but no where near decent enough to afford 400-500 dollars a month in copay. I'll talk to my new neurologist and see what he thinks. I do have some "lesser" requirements but the two I said are the two I just cannot compromise on.

        Comment


          #5
          Originally posted by Daisycat View Post
          The two biggest things for me that make Copaxone my choice are no immune suppression and amazing copay assistance.
          Because of my 1996 lung cancer and chemo & radiation, my neuro figures my immune system is already broken in more ways than one, and only considered Copaxone safe/appropriate for me.

          Also, the side effects really can be minor. In 6+ years I never dealt with anything worse than a bump that took a day or two to go away (not often) and a minute of stinging after the injection (almost every time).
          1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
          NOT ALL SX ARE MS!

          Comment


            #6
            My only issue is the lump that lasts for 2-3 days for me which means I can never do my arms but I'll take that for now. Immune suppression is a deal breaker since being around potential zoonotic diseases is bad for people with bad immune systems.

            Comment


              #7
              Originally posted by Daisycat View Post
              A lot of people on this board seem to hate on this medicine... is it really that bad of a drug? I see it as something with very few side effects and amazing copay assistance. When I was talking about meds this was my top choice by far... I mean flu like symptoms , immune suppression , hospital stays , not great assistance , and a possible fatal brain infection - (OK this last one could just be from my whole brain tumor false diagnosis but still)
              I started on Betaseron in 2003, almost 2 years after my MS began, because it took that long to diagnose me. I was on Betaseron for 5 years; for me, Betaseron was never very effective. I continued to have relapses (1-2 per year). They were severe and each relapse usually resulted in 1-3 weeks of hospitalization.

              After 5 years of fairly unmanageable MS, I switched doctors (from a general neurologist to an MS Specialist). She told me, at my first visit (which was in 2008), that if a patient is having a relapse every year, the MS med is considered to be ineffective. She said, "you aren't even borderline". She switched me to Copaxone. Initially, I took Copaxone 20, but when they came out with Copaxone 40, I switched to that.

              Copaxone has managed my MS much better than Betaseron. I have had only 4 minor flares since my switch in 2008. Only one hospitalization (long story, but it probably could have been avoided if I knew then what I know now), and no flares at all since 2014.

              I went on disability in 2008, after 2 years of no diagnosis / no meds and 5 years of ineffective Betaseron. It is possible that, if I would have been on Copaxone from the beginning, that my MS would not have progressed much. I also know much more about diet and exercise and their effects on MS progression that I did then, and I would have made very different decisions than I have.

              I have been happy with Copaxone. I've been on it for 10 years. That being said, I am aware that there are newer meds that are said to be more effective than Copaxone. My MS Specialist always told me that if I'm using a med that appears to be working, it might be in my best interests not to switch. Also, some of the newer meds have more potential side effects than Copaxone does.

              You are asking good questions DaisyCat. Choosing your med is a very personal and individual decision. Best wishes as you continue to consider options.
              ~ 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


                #8
                Originally posted by Mamabug View Post

                I have been happy with Copaxone. I've been on it for 10 years. That being said, I am aware that there are newer meds that are said to be more effective than Copaxone. My MS Specialist always told me that if I'm using a med that appears to be working, it might be in my best interests not to switch. Also, some of the newer meds have more potential side effects than Copaxone does.

                You are asking good questions DaisyCat. Choosing your med is a very personal and individual decision. Best wishes as you continue to consider options.

                I always thought this as well. As long as I do not appear to be progressing I think staying on something with less side effects is best for me. I do plan to talk to my new neurologist but I also plan to tell him I prefer to stay on this medicine unless he can give me an extremely good reason as to why I should switch.

                Comment


                  #9
                  Originally posted by Daisycat View Post
                  I always thought this as well. As long as I do not appear to be progressing I think staying on something with less side effects is best for me. I do plan to talk to my new neurologist but I also plan to tell him I prefer to stay on this medicine unless he can give me an extremely good reason as to why I should switch.
                  Yes; and there might be good reasons, I don't know. Such as the newer meds being more effective. That is a good conversation to plan to have with your neuro. And, you might decide to stay on Copaxone.

                  I don't know if the course / progression of my MS would have been slowed if I had switched off of Copaxone. But, I tend to blame the first 7 years (no med for 2 years, Betaseron for 5 years) and all of the many, many lesions that formed during those early years that are now, 17 years later, becoming more and more damaged. I don't really blame 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


                    #10
                    Originally posted by Mamabug View Post
                    I don't know if the course / progression of my MS would have been slowed if I had switched off of Copaxone. But, I tend to blame the first 7 years (no med for 2 years, Betaseron for 5 years) and all of the many, many lesions that formed during those early years that are now, 17 years later, becoming more and more damaged. I don't really blame Copaxone.
                    All of our medications work better early on during the primary inflammation phase of the disease course. That's why the growing consensus to hit the disease fast and hard, not waiting for damage to accumulate before moving to "stronger medications."

                    On average, you would have had fewer lesions and flare ups on stronger medications than any of the CRAB drugs, including copaxone.

                    Comment


                      #11
                      Originally posted by Marco View Post
                      On average, you would have had fewer lesions and flare ups on stronger medications than any of the CRAB drugs, including copaxone.
                      That is irrelevant. 17 years ago, CRAB drugs were the only MS treatments available.

                      And there was a huge difference in the management of my MS on copaxone as compared to betaseron. So, if I had been on copaxone 7 years earlier, I expect there would have been a huge difference in my outcome.
                      ~ 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


                        #12
                        Originally posted by Marco View Post
                        All of our medications work better early on during the primary inflammation phase of the disease course. That's why the growing consensus to hit the disease fast and hard, not waiting for damage to accumulate before moving to "stronger medications."

                        On average, you would have had fewer lesions and flare ups on stronger medications than any of the CRAB drugs, including copaxone.
                        But with all the horrible side effects , immune suppression , and sometimes bad copay assistance of the newer drugs I have to ask myself if it is worth it. I have read the side effects of the newer drugs and it sounds horrible and some of them sound like it is something I could in no way keep my curse hidden from people.

                        Comment


                          #13
                          Originally posted by Marco View Post
                          My 0.02.

                          Ten years ago, copaxone was the "go to" medication for many neurologists. It was safe, few side effects and Shared Solutions was a patient friendly company. The other injection medications had similar efficacy ratings, but often had greater side effects.

                          Tysabri was almost the only other game in town and reserved for more severe cases of MS. Many people were highly wary of the medication because of the possibility of contracting PML.

                          In the past 10 years, a number of new medications have entered the marketplace to include oral medications and additional infusion medications. On average, many of the newer medications simply out perform copaxone. Even Tysabri has become a first line medication as we have learned more about the drug and also PML.

                          There are different schools of thought when it comes to MS medication selections:
                          - no medication
                          - start with a lower tier medication and only move to higher tiers as MS progresses
                          - start with the higher tiers medications and try to prevent MS from ever progressing

                          If you want the most conservative and "safest" medication that would probably be Copaxone. If your goal is to aggressively fight MS then you should look at choices beyond Copaxone. Yes, there are wonderful copaxone success stories, but on average there are medications with higher efficacy levels.

                          Today there are basically three efficacy tiers of MS medications with copaxone ranking in the least effective tier. More information can be found here: https://www.msworld.org/forum/showth...omparing-DMT-s


                          For me the therapeutic goal should be "No Evidence of Disease Activity" or NEDA. The best chance of reaching NEDA are the more powerful medications. NEDA details can be found here: https://www.mstrust.org.uk/a-z/neda-...sease-activity

                          I wish you well...
                          Thank you for your reply
                          Last edited by Seasha; 11-01-2018, 05:21 PM. Reason: URL edited out

                          Comment


                            #14
                            Originally posted by Mamabug View Post
                            That is irrelevant. 17 years ago, CRAB drugs were the only MS treatments available.
                            It's not irrelevant to Daisy Cat. She has the opportunity to take "better" medications than were afforded to either of us.

                            Comment


                              #15
                              Originally posted by Daisycat View Post
                              But with all the horrible side effects , immune suppression , and sometimes bad copay assistance of the newer drugs I have to ask myself if it is worth it. I have read the side effects of the newer drugs and it sounds horrible and some of them sound like it is something I could in no way keep my curse hidden from people.
                              Like me, many patients have zero side effects on my current medication. I have been on copaxone, rebif, betaseron, tecfidera, gilenya, IVIg and now rituximab. Rituximab is the first medication that has subdued my MS progression:
                              - Zero lesions
                              - Zero relapses
                              - Zero increases in disability

                              That level of success is extremely rare with copaxone, but is increasingly common with stronger medications. This is your single best opportunity to slow the natural progression of the disease.

                              Is it worth it? To me, absolutely. What we learned in the Tecfidera trial is that the average patient will have a relapse every 13 months and every other relapse causes permanent damage. With each relapse you avoid, with each lesion that never forms you are extending your current level of capability.

                              I never recovered from a 2012 flare up that took away my ability to work, walk, talk, or even eat normally. That and much more was taken from me over just a few days. Hundreds of therapy sessions later I have recovered much of my prior abilities. Had my MS medication prevented that single flare, my life, and my wife's, would have been dramatically easier.

                              I am unaware of any of our medications that have unfavorable patient assistance programs for individuals with commercial insurance.

                              With each medication there are pros and cons that you must weigh out, but please don't prematurely limit your options. That includes not only looking at the short term circumstances, but also the long term consequences of your choices.

                              Your original question was is copaxone a long-term good choice for CIS/MS. Yes, it can be, but imo there are much better choices. In your lifetime there will probably be either a cure, or nearly complete disease management of MS. What probably won't be resolved is a way to undo/repair any accumulated damage. So your goal should be to try and maintain every ounce of capability that you have today and that's where Copaxone comes up short when compared to a number of other options.

                              I wish you well and hope you never have disease progression independent of your medication choice.

                              Comment

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