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    Copaxone to Tysabri?

    I've been on copaxone for 3 years. Age 43 diagnosed in 2010 at age 40. I was a professional musician. Post Gulf War (Air Force), became an Oracle DBA in 98'. I am not a DBA anymore but still work 40 days a week at the local university. I still play some music (Thank God) but certainly not to the degree pre-MS of course.

    OK --

    Last MRIs 7-25-12 showed 3 new brain demyelinating lesions. Cervical/thoracic images reflect no significant changes.

    My neurologist feels it's time for a switch either to interferons like Avonex or Rebif. Also Gilenya or Tysabri.

    Quick history before last MRI's: I had an absolute stressful work situation that lead to pneumonia -> flare up in November/December of 11'. I had to get a disability lawyer to help keep my job. It's amazing what employers do to folks.. I believe this is what lead to the new lesions.

    Oh yeah.. I tried Tec and ended up in the hospital for 4 days. Not an option..

    My Question: I currently walk 1-2 miles a day. I have a small limp on my right side but that's been status quo since this all started. Spasticity,Fatigue,tremors w/ Cold & Heat, Dizziness is also the same. I do not feel any worse with these new lesions. I am leaning towards Tysabri (JVC neg.) but I wanted to ask should I continue on Copaxone or based on the new lesion activity, should I switch.

    Any feedback is greatly appreciated!!

    Thanks so much and God Bless us all!!

    D.

    #2
    Your neuro wants to switch meds. Obviously, what you are on isn't working good enough to satisfy him. What about you, how do you feel about it?

    Just my personal opinion... I'd lean toward the neuro on this one. Best to ya

    Comment


      #3
      If I could've been on Tysabri the 2 1/2yrs I was on C I know I would be going for long walks and dancing like I want. As it is, I am so grateful to Ty for stopping progression and giving me the QOL I do have. I have been on this glorious med for 7 yrs-am 64 years young .

      I know it doesn't relieve sx for some and actually doesn't fit for some but, for those of us who it does work for we are very happy campers.

      Good luck and my best wishes
      Linda

      Comment


        #4
        Thanks Linda and Myoak for your feedback!! I am starting to see that it's time for a new MS med and Tysabri (pros/cons) seems to be the right path to take. Yeah, it is evident that copaxone isn't working for me anymore. I guess I was hoping copaxone would keep doing it's job (as it has very few side-effects). Many MS members are extremely happy with the way Ty has kept progressions/lesions activity at bay. Stopping Ty down the road seems to be an issue but I imagine an "exit strategy" w/ my neurologist is key i.e steroid regimen which can minimize possible relapse...
        I wish you all a wonderful, blessed day!!!! Thanks again!
        Demetrios

        PS: Post military, I was involved in a K-9 search & rescue team. My wife started a few years after I did and has surpassed what I was able to do by "leaps and bounds". Status: No human children. German shepherds only.

        **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

        Comment


          #5
          Definitely try Tysabri. I have been on it for 14 months and have no new lesions. I collected plenty on Copaxone, even though I loved it. I tried the interferons (Rebif) but it gave me bone marrow failure, and high liver enzymes. Ty doesn't give you the flu like symptoms. In the beginning you may have headaches, but just drink some caffeine and take some OTC pain killers of your choice and they will ward it off.

          Good luck, and let us know how it goes, OK?

          Lisa
          Moderation Team
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #6
            Thanks Lisa!! I met with my Neuro on 10-24. After all my research, and the docs feelings about Ty, It's time to give it a go. I go back in a month (post MRIs and will set up the time for the first infusion. I appreciate everyone's feedback!!!

            May it a great day!!

            Comment


              #7
              I want to wish you my best
              If you stay negative for the jcv you may not have to even think of an exit strategy. There have been some who are positive that Tysabri has worked so well for that they don't look to an exit strategy. We all just have to figure it out for ourselves.
              Linda

              Comment


                #8
                Tysabri and the immune system

                Hello,

                Post required tests, I am now getting ready to plan for the first Tysabri infusion. After coming up negative for JCV, I also went to an immunologist to check on the status of my immune system. No allergies (air born/food) and my immune system is currently intact (which is rather HUGE for me considering my history with infections). I am in the process of doing my due diligence and mitigating risk (as much can be done). However, I wanted to ask what increased immune related issues did folks on Tysabri experience example: an increase of infections. Aside from PML and liver damage (low risk), I have read a great deal on Tysabri and how it can also weaken one's immune system which does worry me (again, based on my history w/ infections). I wanted to reach out to folks on Tysabri to get some feedback on this issue. As always, I wish everyone the very best and always "fight the good fight!"

                Be well and God Bless!

                Demetrios

                Comment


                  #9
                  Demetrios: I am glad you are JCV neg. As far as getting infections on Ty, I can tell you that I have had quite a few minor ones on Ty. The ones they warn you that you are more susceptible to. GI viruses, and cold viruses. I have another cold right now. The best thing you can do for yourself is to wear a mask when going into the hospital, and wash your hands really well whenever you leave a doctors office or the hospital. Sanitizers don't work on GI viruses. Major infections I have not had.

                  I wish you the best on Ty. It has been really helpful to me!

                  Take care
                  Lisa
                  Moderation Team
                  Disabled RN with MS for 14 years
                  SPMS EDSS 7.5 Wheelchair (but a racing one)
                  Tysabri

                  Comment


                    #10
                    Demetrious

                    I just started Ty...only two infusions so far.

                    I too am hugely susceptible to infections. I did get one after my first infusion, but it was quickly addressed, antibiotics issued and resolved. Not a big deal really.

                    My infusion center is a Cancer Center and they always...every month do a CBC before the infusion. If my WBC count is not within the normal range, they will delay my infusion. Hope it never comes to that, but it was an extra precaution that the Oncologist monitors.

                    Hope for the best for you on TY.
                    Katie
                    "Yep, I have MS, and it does have Me!"
                    "My MS is a Journey for One."
                    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                    Comment


                      #11
                      Hi Demetrios, excellent that you are jcv-
                      I have started my 8th year on Tysabri, 10/2006; in this time I have had maybe 4 colds, caught from my then husband and 1 from a g-child.

                      I take vitamins, I believe they have kept me well... even when flying once a month, twice in the day for 4 months in the heart of winter. I do use hand sanitizer especially after holding/using a menu. I take other precautions but, not compulsively

                      I hope Ty works, at least, as well for you as it has me
                      Linda

                      Comment


                        #12
                        Originally posted by lindaincolorado View Post
                        Hi Demetrios, excellent that you are jcv-
                        I have started my 8th year on Tysabri, 10/2006; in this time I have had maybe 4 colds, caught from my then husband and 1 from a g-child.

                        I take vitamins, I believe they have kept me well... even when flying once a month, twice in the day for 4 months in the heart of winter. I do use hand sanitizer especially after holding/using a menu. I take other precautions but, not compulsively

                        I hope Ty works, at least, as well for you as it has me
                        Linda, I hope TY works as well for all of us as it has you! You rock!
                        Katie
                        "Yep, I have MS, and it does have Me!"
                        "My MS is a Journey for One."
                        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                        Comment


                          #13
                          Lisa,

                          Thank you for all your feedback and will be taking precautions as you mentioned.

                          I wish you a wonderful day / weekend!!

                          Demetrios


                          Originally posted by 22cyclist View Post
                          Demetrios: I am glad you are JCV neg. As far as getting infections on Ty, I can tell you that I have had quite a few minor ones on Ty. The ones they warn you that you are more susceptible to. GI viruses, and cold viruses. I have another cold right now. The best thing you can do for yourself is to wear a mask when going into the hospital, and wash your hands really well whenever you leave a doctors office or the hospital. Sanitizers don't work on GI viruses. Major infections I have not had.

                          I wish you the best on Ty. It has been really helpful to me!

                          Take care
                          Lisa
                          Moderation Team

                          Comment


                            #14
                            Katie,

                            Thanks for the feedback about having a CBC check done before the infusion. This seems sound to me. I Never thought of this...

                            Take care and have a wonderful day!!

                            Demetrios



                            Originally posted by KatieAgain View Post
                            Demetrious

                            I just started Ty...only two infusions so far.

                            I too am hugely susceptible to infections. I did get one after my first infusion, but it was quickly addressed, antibiotics issued and resolved. Not a big deal really.

                            My infusion center is a Cancer Center and they always...every month do a CBC before the infusion. If my WBC count is not within the normal range, they will delay my infusion. Hope it never comes to that, but it was an extra precaution that the Oncologist monitors.

                            Hope for the best for you on TY.

                            Comment


                              #15
                              Wow! 8 years... Thanks for the feedback and yes, vitamins and precautions more then ever must be utilized. Thanks so much and I am so glad to hear that Ty has been so good for you! I just had my Brain MRI done two days ago. Just to benchmark were I am prior to starting Ty. Well if there was ever a doubt in regards to if I should start Ty, not so much now. New Brain lesions have formed and I haven't had a flare up since the last series of MRI's. 7-10-12. Now I know, it's definitely time for a med change and Ty seems to have the best "track record" for reducing/slowing down lesion activity.

                              Thanks so much!!!

                              Have a wonderful day!!

                              Demetrios


                              Originally posted by lindaincolorado View Post
                              Hi Demetrios, excellent that you are jcv-
                              I have started my 8th year on Tysabri, 10/2006; in this time I have had maybe 4 colds, caught from my then husband and 1 from a g-child.

                              I take vitamins, I believe they have kept me well... even when flying once a month, twice in the day for 4 months in the heart of winter. I do use hand sanitizer especially after holding/using a menu. I take other precautions but, not compulsively

                              I hope Ty works, at least, as well for you as it has me

                              Comment

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