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Tysabri as first line treatment. vs. Copaxone.

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    Tysabri as first line treatment. vs. Copaxone.

    Hey everyone,

    What are your thoughts about Tysabri as a first line drug? My onset was in April and was diagnosed officially in July. Presented with optic neuritis which resolved 99% in about two weeks. Have been clinically asymptomatic since but due to the presentation (evidence of past inflammation, a couple small lesions on my brain and spine as well as one big tumefactive lesion on my brain) my doctor basically wanted to start me on Tysabri at the first appointment. It's a little hard to swallow. She mentioned Copaxone as well when I expressed unease with Tysabri at our last appointment, but I think she is a bit more hesitant about that drug for me. She said in her clinic note that she wanted me to have a positive experience with my drug. I'm warming up to Tysabri a little bit but the however small risks still freak me out and I wonder if I would be better off stress wise to try Copaxone first. I also worry about rebound effect after discontinuing a drug like Tysabri assuming I'm not going to be on it forever.

    Anyone else here start Tysabri as their first DMD? What made you decide to go with that? I want to do what is best for myself but I am still unsure which choice that is. I am in a place of acceptance now where I am ready for a DMD, I just don't know how to decide which is best for me. I really would like to minimize the stress in my life as I think it's a big agitator for this disease in general.
    My primary care suggested getting a second opinion to help ease my mind a little bit. We all know how difficult getting an appointment with a new specialist is.

    Hard to know what to do.
    I feel like I'm just going in circles in my head at this point.

    #2
    Hi Foxglove,

    God bless you as you sort through everything going on to come up with what is right for you. Your doctor will be a great help, I’m sure. Keep learning so you two can have conversations which will lead to the best treatment for you.

    I don’t know what is right for you but I clearly remember the day when she said the same thing as you, “I am in a place of acceptance now where I am ready for a DMD”. MS gets us to that place; most MSers have come to the same realization.

    There has been a recent trial (the GATE trial) involving copaxone (glatiramer acetate) and a generic version of it. Also, included were some patients on placebo. The results published last year contained surprises, both bad and good.

    First surprise was the lack of difference in relapse rate for between glatiramer acetate and placebo since original trials had shown about a 30% reduction in relapse rate between copaxone and placebo. In the recent trial there was only 5.8% reduction in the generic and only .1% in copaxone; together they demonstrated no significant reduction in relapses compared to placebo in this trial of 700+ patients.

    However, copaxone and the generic version both demonstrated a reduction of lesions seen on MRI by about 50%. That is significant. You can find that info here for verification:

    **Moderator's Note: URL is login page for this site - not the article**

    The figures for Tysabri are much better. The reduction in annualized relapses rate of 90.7% was reported in this ongoing trial:

    http://www.ncbi.nlm.nih.gov/pubmed/24915752
    Safety and efficacy of natalizumab in Belgian multiple sclerosis patients: subgroup analysis of the natalizumab observational program.

    Tysabri reduced new MRI lesions by about 90% in clinical trials.

    There is a serious safety issue with Tysabri called PML. About 600 out of about 140,000 who have taken Tysabri have gotten PML; it is a terrible disease. Methods to mitigate PML risk are being developed and show promise. Also, protocols of treatments for treating PML are in trial and are having some success. PML remains the prime risk factor on Tysabri.

    Personally, I feel that the possible/likely damage of MS progression must be a part of treatment considerations. It’s always a guessing game. No one knows ahead of time what the outcome will be. We look at percentages of effectiveness, consider safety issues (what can we sleep with?) and make our best guess.

    Possibly, the aggressiveness of MS is something your doctor is looking at. If MS is aggressive copaxone may not do what is needed. Tysabri may because it has a great track record of effectiveness but it has the PML issue, also.

    Thank you for posting, you have my sincere desire for success. Don’t be discouraged or dismayed by what you face. My wife was diagnosed in 1982 and we have lived a largely normal life. She was among the first on natalizumab (Tysabri) and continues to do very well.

    All our best to you. We are pulling for you beyond expression.

    Comment


      #3
      Some clarifications...

      "I don’t know what is right for you but I clearly remember the day when she said the same thing as you, “I am in a place of acceptance now where I am ready for a DMD”. Sorry, I should have said, "my wife", not "she"!

      Also, the Medscape article I referenced is titled, "Generic GA Shows Equivalence on MRI Endpoints in MS" if you want to Google it.

      The GATE study data was of a short duration. In longer-term trials we see glatiramer acetate staying close to the 30% reduction in relapse rate! Important to note.

      As far as Tysabri goes, some of real world data complied from clinical use is actually better than the data from clinical trials. Some of that real world data is reflected in the link I provided for Tysabri.

      Hope this helps clarify things a bit.

      Comment


        #4
        foxglove,

        I chose Tysabri as by first DMT back in 2010. Since I was older (58.5 at the time), my neurologist knew my future probably held a quicker progression due to my age. Unfortunately, time has found that to be true. However, I knew that going in, and I knew I needed the drug with the strongest efficacy; at that time, that was Tysabri. I slipped through the cracks and was allowed on the drug, even though I hadn't "failed" two other DMT's. Whew! Luckily, Tysabri is finally considered a first line drug due to its strong efficacy, so you should have no difficulty taking it.

        I was RRMS for only a couple years before I progressed to SPMS; however, I am quite convinced Tysabri is the ONLY reason I haven't developed more disability than I currently have. Luckily, I am JC- (10 tests at least), but I would have chosen the drug even if I was positive; QOL was my most important goal.

        Luckily for you, five years later, much more is know about Tysabri and its benefits and risks, and so whatever decision you make should be easier. Yes, PML is deadly, but Biogen researchers have found ways to mitigate the risk including more definitive blood tests and more frequent MRI's. Believe me, Biogen does't want any more PML cases; it hurts their bottom line. They even pay for the JC- virus test, a test that costs upwards of $1300.

        Things to keep in mind (in addition to the great advice Myoak has provided) working backwards to Tysabri as a DMT.

        1. Research has shown that brain volume is a determining factor in long term MS disability.
        2. In order to preserve brain volume, you need to stop the inflammation from entering the brain. Constant inflammation is what causes a loss of brain volume, and remember, the symptoms you do experience are only the tip of the iceberg: 95% of MS damage is unseen and unfelt.
        3. By stopping inflammation in the brain, your body is able to heal with "brain reserves" no longer being needed to fight those nasty white blood cells invading your brain. This is age dependent. The younger you are, the better the outcome. That is why my age at diagnosis wasn't a good thing.
        4. Research has shown Tysabri has the strongest efficacy for preventing those pesky white blood cells from crossing the blood/brain barrier. My latest MRI showed I had normal brain volume for someone my age. Woo hoo!

        Dr. Vollmer and Dr. Corboy from the RMMSC have videos on YouTube that explain this process more clearly.

        Additional information

        1. In addition to preserving brain volume, Tysabri has also shown improved cognition when compared to other DMT's.
        2. New research has shown the efficacy of Tysabri remains the same, even when infusions are spread out to every 5, 6, and even 8 weeks. Delaying infusions has also produced no development of PML.
        3. Don't choose or not choose a DMT based on cost; there is little difference, and spreading out the infusions would make Tysabri more cost effective!
        4. Tysabri is, at the most, one stick every 28 days, followed by a couple hours of relaxation while you watch TV or read a good book. For me, Day 1 is just like day 28; I have no reaction to the drug at all: none, nada, zilch!

        I wish you could see the young (for me) adults at my infusion center who take Tysabri. The nurses are amazed at their ability to lead a completely, normal life. You wouldn't even know they have MS, and I must admit, I am envious of them. However, I am very thankful Tysabri came along when it did, because chances are good they will lead a normal life. There is a woman on another forum who has been on Tysabri since 2002, and her husband believes she is still RRMS thanks to Tysabri.

        Good luck in whatever decision you make; however, if it were me, I would definitely choose Tysabri.

        Comment


          #5
          I started with Tysabri after Avonex, used Avonex for 6 months and still had relapses, my doctors were fearing for my eye sight because of the many optics neuritis's so they changed me to Tysabri. Honestly it was the best thing ever. I still had a few relapses but my MS is super stable, no lesions whatsoever on the MRI, I did have a few relapses but they "healed". I have to quit now and haven't had Tysabri for 1 week and I definitely can feel it. Tysabri gave me energy and made me feel normal again. Didn't have to worry about injecting myself each week and dealing with stupid side effects. Tysabri is just once a month and that's really it!

          The only side effects I had while on Tysabri were UTI's, headaches and sometimes inflammation around my chest. My doctors always said to me to hit the MS as hard as possible to prevent relapses. However do take in consideration that Tysabri has an average use of 5 years. I myself took it for almost 5 years. After 5 years people can get positive for the JC virus and have high titer values (which I have) which means greater risk for PML. Some people develop antibodies for Tysabri after a few years as well.

          I totally know how you feel as I have to choose between Gilenya and Lemtrada now and the side effects of these drugs are in my eyes a lot more scary than Tysabri was. Perhaps you could try Avonex or something else for 6 months and see how your body reacts to it? That way you would know if a first line treatment is enough to keep your MS quiet. Possible relapses would be a risk though.

          Comment


            #6
            Thank you everyone for your responses. My appointment is coming up fast and I am still not sure. I am feeling more comfortable with Tysabri but I'm still only at 70-75%, I'd like to be at 90% comfortable. I think I need to ask my doctor more questions. Then again, I worry about making the wrong choice with Copaxone and not coming back from it. Honestly the spinal involvement is what really freaks me out, even though I am currently not feeling anything from it. Even the big honkin' lesion on my brain doesn't make me as concerned.

            Dexter I am glad you mentioned your 6 month trial with Avonex. I have thought about that for Copaxone, since I am pretty comfortable with the idea of trying the drug itself. I know some people get nasty reactions from it but they are reversible it seems and that is what makes me less nervous about it.

            I am glad my eyes recovered so well from the onset ON. When I first went to the ophthalmologist I heard the optometrist talking outside of the exam room say "She has just been walking around like this!" It's true, I even went to work with it until it got bad enough that I couldn't drive. I couldn't see central vision detail at all, but for some reason THAT comment hit me more than my actual experience with it. I think I need to learn to read my body a little better.

            I believe I am technically JCV+ according to the test itself but my doctor said that they don't concern until you are at .9. At least I believe that is what she said, but mostly my appointments with her have been me sitting there anxious trying to listen to what she is saying. I am JUST over the threshold at .23, or was at my first appointment, which I think is actually indeterminate?

            I am hopeful about the extended dosing research that is coming out now. I think that in a years time they will have a lot of the risk managed quite well with Tysabri.

            I want to take care of myself, it's just so hard to know what to do. I don't want to wait until there is a problem to attack this thing, but I also wonder if Copaxone would be enough for me to manage it? Maybe not.

            Are they figuring out a way to manage Tysabri rebound effect, for people who don't stay on it long term? That's just another concern for me.

            Arghhhhh.
            Thank you so much for your feedback and all of the information.
            I have a bit more thinking to do.

            Comment


              #7
              I do have to tell you that if you are considering a 6 month trial with Copaxone, you should realize that with these first line drugs it usually takes up to 6 months or a year until they get truly 100% effective... Maybe that has changed now but that is something that my doctor back then told me. Tysabri back then was not an option as insurance wouldn't let me, had to try the first line meds first and if that was ineffective I could try Tysabri.

              As far as the rebound effect, I have no idea on that... I hope that will not be something that I might experience urgh.

              Isn't it so that the risk on PML is the smallest the first 2 years? Even if you're positive? My titer value was 2. something and last month it was 1.92 so still too high. They will keep monitoring your titer value when you're on Tysabri though, if it spikes a lot you can still stop.

              Look at it this way: Tysabri will hold off your relapses for 60% whereas Copaxone will for a lot less. Yes the side effects of Copaxone are a lot less serious but so is MS. I'd rather take the possible side effect then progressing even worse.

              Comment


                #8
                Hello. I was diagnosed in June 2014 and tried Tecfidera for 1 month but didn't like the side effects (for me, it was only rapid weight gain), so I switched to Tysabri, so it's essentially a first-line drug for me. I was initially terrified of Tysabri when I first got my diagnosis, but after reading more and talking with my doctor at a major MS center, I became convinced that it was the best way to start. I'm 47 and in good shape overall; my diagnosis came after double vision that resolved within 3 weeks. Only occasional symptom is slight hand and leg tingling that I wouldn't even notice if I didn't know I had MS.

                I have been on Tysabri for 13 months now and have had a great experience with it. I am JCV- and hope I stay that way as long as possible. I have had zero side effects from the infusions. For the first few months, I felt a little tired the day after an infusion, but that might just have been psychological. I have had no relapses and no MRI changes in a year. I am also very glad not to have to give myself a shot. Just a few hours once a month and I'm golden.

                I've asked my doctor about the rebound effect of withdrawing from Tysabri and how to prevent it, and he says they typically switch people to rituximab (another monoclonal antibody infusion drug) right after stopping Tysabri and have been able to prevent rebounds and relapses very well with that approach. I am fortunate to live near a major MS treatment and research center that treats MS aggressively.

                I, too, recommend the videos from Dr. Corboy and Dr. Vollmer about the importance of treating MS aggressively from the very beginning. They helped convince me. They also convinced me of the importance of exercise to retain brain flexibility and adaptability. Good stuff. Check them out on YouTube.

                I was also persuaded by the posters here and elsewhere who said they wished they'd been able to start Tysabri much sooner to prevent disability. Once the damage is done, it's done (until they find a good way to repair myelin). Preventing the damage from the get-go seems like the best approach to me.

                Best of luck with your decision. I know it's very scary and filled with uncertainty, but you will get through it and make the best decision for yourself. Also, keep in mind that if you start conservatively, nothing prevents you from switching to another DMD as you become more familiar with MS and how it affects you.

                Comment


                  #9
                  Originally posted by foxglove View Post
                  Hey everyone,

                  What are your thoughts about Tysabri as a first line drug?
                  Hard to know what to do.
                  I feel like I'm just going in circles in my head at this point.
                  I'll tell you about my experience — if I had to do it over again I would have started off with Tysabri from the get-go. I went through a few drugs that seemed to do nothing and ate up a good few years where I could've been on something that was actually effective.

                  Mind you, it took me a full 9-12 months to be OK with taking Tysabri so I don't think your hesitation is unusual at all.

                  I would still be on it if I hadn't developed an allergic reaction at my 8th infusion. About four months after they took me off it, though, I had a terrible relapse that I've never recovered from. So I caution you to clarify with your doctor exactly what will be done if you need to come off the drug suddenly.

                  Comment

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