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    tysabri vs tecfidera

    Well after almost 12 years on Avonex, my latest MRI shows changes and new lesions, so I need to switch to a new medicine. I'm wondering if anyone has opinions or info about which might be more effective, tysabri or the new tecfidera (still waiting for lab work to see if I am JVC + or -). I'm worried about forgetting to take a pill twice a day, but am also worried about the potential side effects of tysabri. Any input welcome. Thanks!

    #2
    Were you stable for 12 years? That's not a bad result on Avonex. Why are you considering a jump to Tysabri and not to Gilenya or Tec? Just curious.

    Comment


      #3
      I couldn't tolerate the other drugs, highly allergic to ago ex, hence no rebid, did copaxone for a year, had rare, unusual side effect had to stop, didn't take anything for past eight years. This past year, spine lesions. Can't do girl yenta cause of heart problems in my family, was approved for aubbugio, decided to wait for bg-12, tecfidera. Never wanted to even try tysabri, it goes against how much chemo you can have in your lifetime and I don't want to risk that, just me. Tecfidera, did a lot of research on BG 12, way less side effects, and seems to help more than any. Other disease modifying drug. Granted you take any of these on blind faith that hopefully you're in the percentile they actually help. I've been on tecfidera for ten days now, knock wood, no side effects. Which for me is almost abnormal to even say so knocking wood again. Good luck to you in whichever med you choose!

      Comment


        #4
        Sorry new to MS. What does JCV mean?

        Comment


          #5
          Hi Mellow,

          I will list the results of two Phase 3 trials involving Tecfidera (BG-12) taken twice a day (BID). And, I will list the results of Tysabri from a Phase 3 trial. The results in all of these trials are compared to placebo. You should understand that it is not entirely legit to compare meds using different patient populations in different trials.

          The best comparisons can be made when both meds are given as part of the same trial using the same patient population. Rarely do drug companies want to do that so we are left with an imperfect way to compare meds. Hope that made some sense. Basically, comparing meds to placebo is not perfect but it is all we have when head to head trials are not done.

          BG-12
          DEFINE PHASE 3 TRIAL RESULTS:
          Taken twice daily (BID)
          53% annual reduction in relapse rate
          44% relapse rate reduction at 24 months
          21% reduction in disease progression
          38% reduction in disability progression
          85% reduction in the mean number of new or newly enlarging T2 hyperintense lesions
          90% reduction in gadolinium enhancing lesions
          72% reduction in T1 hypointense lesions

          CONFIRM PHASE 3 TRIAL RESULTS:

          Taken twice daily (BID)
          44% annual reduction in relapse rate
          34% relapse rate reduction at 24 months
          21% reduction in disability progression
          71% reduction in the mean number of new
          or newly enlarging T2 hyperintense lesions
          74% reduction in gadolinium enhancing lesions
          57% reduction in T1 hypointense lesions
          30% reduction in brain atrophy

          The serious or adverse events for patients on BG-12 and placebo were statistically similar.
          Common side effects were Flushing in 38%, Upset stomach, diarrhea, nausea, abdominal pain and
          headache. The studies revealed a decrease in side effects for most patients after one month on therapy.


          TYSABRI
          AFFIRM PHASE 3 TRIAL RESULTS

          68% annual reduction in relapse rate
          81% relapse rate reduction at 24 months
          42% reduction in disability progression
          83% reduction in the mean number of new
          or newly enlarging T2 hyperintense lesions
          92% reduction in gadolinium enhancing lesions

          Tysabri has superior effectiveness, twice the % reduction in disability progression; however, it also has risk of PML in JCV+ patients.

          Comment


            #6
            got more info

            thanks for your replies and input! (and for the new person, JCV is the JC virus - if you have been exposed to it, which they can determine from a blood test, you have a higher likelihood of developing the brain infection (PML) from the use of Tysabri - however, the risk is very, very low in either case). And yes, I was stable for 12 years.
            I got more info from a neurologist who said that Tysabri is the most effective MS drug out there, followed by Tecfidera, and then the regular injectables (Avonex, etc). He also said Tysabri is the only approved medication that actually can bring about some improvement and that very few people have side effects. Also, they have had many people on Tysabri for over 5 years now and there are no apparent new long-term side effects.
            So I am likely going to go with the Tysabri.

            Comment


              #7
              Tysabri vs Tec

              I have had over 80 doses of Tysabri. I love it. More energy, decreased sx. The only reason I would consider going off it is because my neuro is concerned about my risk of PML due to JCV and so many doses. Even then, I will probably try to go back on in a year (neuro said body resets itself and the risk won't be as high then).

              So in my humble opinion, I would go on Tys. if you can.

              Comment


                #8
                I spent three plus years on Tysabri and then went back to Copaxone which gave me better results. Copaxone is safe and has a long track record. Is that an option for you? I took Copaxone for 18 months, switched to Tysabri and stayed for more than three years but the symptoms were worse for me. So I went back to Copaxone and have been taking it more than three and a half years since. I'm looking forward to the new formulation for three times a week for Copaxone and I plan to stay with it as long as I an stable.
                Take care, Wiz
                RRMS Restarted Copaxone 12/09

                Comment


                  #9
                  I CAN ONLY SPEAK FOR TYSABRI, I DON'T HAVE EXPERIENCE WITH THE OTHER.

                  I AM JVC+ BUT I'M HAVING WONDERFUL LUCK ON TY. WHILE I STIL HAVE THE MS SYMPTOMS, I AM ABLE TO RECOVER FROM THEM VERY QUICKLY. WHERE THE FATIGUE MAY HAVE PUT ME TO BED FOR 2 TO 3 DAYS, NOW SOMETIMES JUST A GOOD 12 HOUR NIGHT SLEEP TAKES CARE OF IT AND I'M ABLE TO WORK THE NEXT DAY. I WAS OFF WORK YESTERDAY BECAUSE I DID SO MUCH DURING MEMORIAL WEEKEND (YES I KNOW BETTER, BUT IT FELT SO GOOD TO BE OUT ON THE LAKE LIKE NORMAL PEOPLE) BUT IT WAS ONLY A DAY AND I'M FINE TODAY. A YEAR AGO I PROBABLY WOULD HAVE BEEN OFF THE REST OF THE WEEK.

                  I SUFFERED FROM DIZZINESS TERRIBLY AND IT HAS HELPED THAT SO MUCH. I AM ABLE TO GO BOATING AGAIN AND DO THE THINGS THAT I LOVE THAT I HAVEN'T BEEN ABLE TO DO IN THE PAST FEW YEARS.

                  THE FATIGUE ALSO SEEMS SO MUCH BETTER.

                  HOWEVER, NOW THE DOWN SIDE, SINCE I AM JVC+ I HAVE A DECISION TO MAKE DO I STAY ON IT AND TAKE MY CHANCES OR GET OFF. AND IF I GET OFF THE DRUG WHAT ABOUT THE REBOUND EFFECT, THAT SCARES ME TO DEATH ALSO.

                  I HAVE A FEW MONTHS BEFORE I HAVE TO MAKE A DECISION WITH MY NEURO BUT THE SITUATION I AM IS CAUSING ME STRESS, I DON'T WHAT TO DO. SO I WOULD LOOK INTO THESE ISSUES ALSO.

                  I WAS NOT ABLE TO TAKE SOME OF THE OTHER CRABS SO I THINK TY IS WONDERFUL BUT IT COULD COME WITH SOME COSTS.

                  IT'S A PERSONAL DECISION, GOOD LUCK

                  Comment


                    #10
                    @Mellow

                    Interferons don't work for me anymore. After 12 years did your Neurologist ever test you for interferon neutralizing anti-bodies?

                    My new neurologist did and I was way above normal for Rebif/interferon anti-bodies.You should get blood-work done to see if you are as should every MSer that is on an interferon treatment.

                    Here is a suggestion/ personal game-plan.
                    - I am JC+ switched from Rebif to Tecfidera.
                    - Staying on Tecfidera until new Tysabri comes out for PPMS, 1-2 years.

                    - Stay on Tysabri for 1-2 years until next best medication comes out. Hopefully it is anti-lingo-1

                    - 2 years Tecfidera
                    - 2 years tysabri
                    I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                    Bill Hicks

                    Comment


                      #11
                      Thanks for more input/discussion! I have had my first Tysabri infusion and zero problems or side effects. I had it and then went to work straight from there - no issues at all.
                      I did not ever have the blood test for interferon neutralizing anti-bodies - I will have to ask my neuro about that. I do have my personal suspicions that the reason my Avonex may have decreased in effectiveness for me over the last year was because I was taking prescription anti-inflammatories (and some other medications I had never taken before) for other other health issues for close to a year (I am off the anti-inflammatories now). So I suppose if I ever have issues with the Tysabri I could maybe go back on an interferon, but we are all so blessed that there are so many choices of medication now and more in the pipeline, that who knows what may be available should the need arise for a change.

                      Comment


                        #12
                        Originally posted by Mkc3031 View Post
                        .... Never wanted to even try tysabri, it goes against how much chemo you can have in your lifetime and I don't want to risk that, just me. Tecfidera, did a lot of research on BG 12, way less side effects, and seems to help more than any....

                        Hi, I am newly diagnosed with RRMS. (38 y/o female. Totally negative on JC virus!)
                        Doctor is in favor with starting me out on Tysabri. (as my first drug used).
                        I am considering Tysabri vs. Tecfidera. (She also appears to be in favor of Tecfidera, but seems to think I will have less likelihood of relapse or new lesions with Tysabri).

                        I find the above quote interesting, but have not come across this myself. So, you are saying that having Tysabri now might make it so that we can't have chemo...should we develop cancer in like 20 years? Or maybe we can't have as extensive chemo as might be needed.

                        Additional info/clarification on this definitely appreciated as I try to weigh options.


                        Also, general comments on starting out on Tysabri as first medication also appreciated. I don't think it is that common. If anyone else started on Tysabri from the get-go I'd like to hear from you too! I do believe that my doctor's thinking is that I am relatively "young" and that it is of most importance to not get new lesions, not have relapses for as long as possible...and I think she thinks this will be the best bet of that. (But definitely a kind of scary one). Please reply with anything you think I should be aware of about Tysabri. (Yes, I know about the PML risk).

                        Side note: Weight is an issue for me. I carry a lot of excess weight in stomach. Trying to really focus on low carb/Wahl's Protocol-ish diet to lose weight at moment. Only about 2 weeks into that. Not gaining weight is a definite preference, as I think being overweight is not going to help me in the long run at all.
                        RRMS Dx: 3/23/15
                        (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
                        Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

                        Comment


                          #13
                          Tysabri is my drug of choice

                          Teekybird,

                          I was diagnosed at 58, and Tysabri was my first (and only) DVD. At the time, I really shouldn't have been allowed to take the drug since it wasn't a "first line" choice. However, it is now. Lucky you!

                          I've just had my 62nd infusion and have been extremely happy with my decision. My neurologist recommended Tysabri because it was the most effective DMD drug currently available and still is. Due to my age, the chances I would quickly move to secondary progressive were high. I looked at the other drugs, but the side effects of flu symptoms, vomiting, depression, etc., etc., etc., were nothing I wanted. I have had absolutely NO side effects from the Ty; day 1 is just like day 28. I did test negative for the JC virus, so my chances of developing PML are nil. Quest diagnostics will do the test at no cost to you (others charge $1300 at least), and I do the test every six months since there is a 2 to 3% chance of seroconversion.

                          Why Tysabri? The goal is to stop the inflammation being caused by your body attacking itself. Tysabri does this by preventing the antibodies from crossing the blood brain barrier. If this process can be stopped, depending on your age, there is a good chance the body can heal and/or rewire itself, so that you can improve. For me, not so much. Due to my age, those extra reserves we are all born with were depleted by the time I acquired MS since I had spent 28 years corralling K-8 students. You are young enough you could see improvement.

                          If you haven't had the chance, I strongly recommend the videos on YouTube by Dr. Vollmer. He is at the Rocky Mountain MS Center in Denver. His recent WebNar on "Maximizing Brain Health" would be well worth a watch. This one, alone, IMHO, will tell you why you should take Tysabri. "The Future of Evidence Based Decisions" is also excellent.

                          There is no reason for you to be scared of Tysabri. For me, Tecfidera and the CRABS are scary! One stick once a month, two hours to read a good book and enjoy a cup of tea, and I'm good to go for a month. It's a no-brainer!

                          That comment by Mkc3031? Never heard of anything related to chemo/Tysabri and less side effects with Tecfidera? You've got to be kidding! I really don't believe that is accurate information, but do check with your neuro. Take a look at Myoak's post several posts down! He knows his stuff, and all of his posts are well worth reading.

                          Hope this helps. Good luck with your decision. I look forward to infusion #63.

                          Comment


                            #14
                            Hey there, I'm 24 (jcv- also!) and pretty newly diagnosed. My old neuro tried to start me in tec but I got very sick and quit taking it the first day. My new neurologist put me on tysabri immediately. I think it doesn't have to do with how young you are, but it does have to do with how severe and aggressive your ms is. I don't know about yours, but mine is pretty aggressive, so my doc decided to be aggressive treating it. I have not had even one side effect with tysabri (granted I just only had my second dose a few days ago). I like it so much better than tecfidera

                            Comment


                              #15
                              [QUOTE=Teekybird;1475223]Hi, I am newly diagnosed with RRMS. (38 y/o female. Totally negative on JC virus!)
                              Doctor is in favor with starting me out on Tysabri. (as my first drug used).
                              I am considering Tysabri vs. Tecfidera. (She also appears to be in favor of Tecfidera, but seems to think I will have less likelihood of relapse or new lesions with Tysabri).

                              I find the above quote interesting, but have not come across this myself. So, you are saying that having Tysabri now might make it so that we can't have chemo...should we develop cancer in like 20 years? Or maybe we can't have as extensive chemo as might be needed.



                              Additional info/clarification on this definitely appreciated as I try to weigh options.


                              Also, general comments on starting out on Tysabri as first medication also appreciated. I don't think it is that common. If anyone else started on Tysabri from the get-go I'd like to hear from you too! I do believe that my doctor's thinking is that I am relatively "young" and that it is of most importance to not get new lesions, not have relapses for as long as possible...and I think she thinks this will be the best bet of that. (But definitely a kind of scary one). Please reply with anything you think I should be aware of about Tysabri. (Yes, I know about the risk of PML),

                              From my experience, I would say, "you have a wonderful opportunity to prevent any progression" that's a miracle! When I was first dx patients could nit go on Tysabri unless they could show evidence that other treatments aren't working. I went of Avonex which seemed to make it all worse.

                              Finally a had a major flare and my neuro spent an entire day fighting with the touch program to get me on it. But what a relief to feel some control over this monster.
                              But I was angry. If I could have been offered Tysabri from the beginning, I believe I could have avoided a lot of disability.

                              So I wrote to the FDA and told them my story. Next thing I know, patients are given a choice of anything for their first line of treatment. My letter may have had an effect but it was too late for me.

                              The question was Tecfidera or Tysabri, right?

                              There is no comparison. The side effects of Tecfidera are so terrible no one should have to subject themselves to it.

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