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    Welp.

    Hey guys! Long time no talk... soooo I was hoping to get your opinions. My neurologist wants me to start Tysabri. Had an optic neuritis incident while on Rebif that made me lose partial sight in my right eye (temporarily?) a few weeks ago. Been on Rebif a little over 3 years.

    Im skeptical because I know he’s a big Tysabri guy and this drug scares me. I’m jcv neg (.11) but what about encephalitis? Lung infections? UTI? How often do you guys get these things? Just looking for personal experiences from people who use Tysabri.

    Also, I have teeny veins besides one big one in my arm that every doc likes to use. Will using Tysabri destroy my good vein after a while? How have your veins been while using this drug long term?

    Last, I hear the rebound is BAD if you leave Tysabri. Worst break up ever. ;-)

    thanks for responding. These are questions I’ve asked my (Biogen fan) neurologist but I’m looking for personal experiences from people who use the drug or love someone who uses it.❤️
    "It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate,
    I am the captain of my soul." ˜William Ernest Henley

    #2
    a thought

    Hey DPL, I'm a Tysabri fan girl with only one infusion under my belt.

    infections / resources
    According to the linked study below, first generation drugs (unlike Tysabri, a second generation drug) pose almost no infection risk. But it's a fact that their efficacy in studies is also lower than Tysabri. So for comfort(?) you could consider the higher infection risk with Tysabri as inversely proportional to the risk of permanent disability from MS progression when on it. According to this study, the risk of infections requiring hospitalization is no higher with Tysabri than first generation DMTs.

    ** Study regarding DMTs and infection risk
    https://multiplesclerosisnewstoday.c...nfection-risk/

    You can compare safety and efficacy in a couple of fairly recent charts, which you may have seen. Here is a report from 2016, including a link to an update, that I referred to often in thinking about Tysabri and other meds. This may also help with questions for your neurologist.

    ** Comparative Safety of MS Medications - 2016 update
    https://rxview.adverahealth.com/the-...-a-2016-update

    ** Comparative Safety of MS Medications - Report
    https://info.adverahealth.com/specia...is-2016-update

    big pharma and your doctor

    I also just want to say something about Biogen. I distrust big pharma. My mother died from chemo, basically, back in the 70s when it was super toxic. But really? Have you asked your neurologist how many fewer of his MS patients become completely disabled these days, as compared with 20 years ago? And what about the power you have over your own health while taking a somewhat risky drug? Don't we still play a major role in continuing to be responsible for our own health and possibly preventing those infections? I don't buy the argument that medicine is poison. I hold pharmas responsible for being capitalists who are hugely focused on making a profit. I understand that logic, especially with how much these medicines cost. But i don't think they dismiss inherent harm to the patient as part of their profit game. If you think your doctor is taking kickbacks from Biogen, enter his name here:

    https://projects.propublica.org/docdollars/

    All the best, G
    All the best, ~G

    Comment


      #3
      Agreed.

      Originally posted by gargantua View Post
      Hey DPL, I'm a Tysabri fan girl with only one infusion under my belt.

      infections / resources
      According to the linked study below, first generation drugs (unlike Tysabri, a second generation drug) pose almost no infection risk. But it's a fact that their efficacy in studies is also lower than Tysabri. So for comfort(?) you could consider the higher infection risk with Tysabri as inversely proportional to the risk of permanent disability from MS progression when on it. According to this study, the risk of infections requiring hospitalization is no higher with Tysabri than first generation DMTs.

      ** Study regarding DMTs and infection risk
      https://multiplesclerosisnewstoday.c...nfection-risk/

      You can compare safety and efficacy in a couple of fairly recent charts, which you may have seen. Here is a report from 2016, including a link to an update, that I referred to often in thinking about Tysabri and other meds. This may also help with questions for your neurologist.

      ** Comparative Safety of MS Medications - 2016 update
      https://rxview.adverahealth.com/the-...-a-2016-update

      ** Comparative Safety of MS Medications - Report
      https://info.adverahealth.com/specia...is-2016-update

      big pharma and your doctor

      I also just want to say something about Biogen. I distrust big pharma. My mother died from chemo, basically, back in the 70s when it was super toxic. But really? Have you asked your neurologist how many fewer of his MS patients become completely disabled these days, as compared with 20 years ago? And what about the power you have over your own health while taking a somewhat risky drug? Don't we still play a major role in continuing to be responsible for our own health and possibly preventing those infections? I don't buy the argument that medicine is poison. I hold pharmas responsible for being capitalists who are hugely focused on making a profit. I understand that logic, especially with how much these medicines cost. But i don't think they dismiss inherent harm to the patient as part of their profit game. If you think your doctor is taking kickbacks from Biogen, enter his name here:

      https://projects.propublica.org/docdollars/

      All the best, G

      Thanks for for posting the links and thanks for your reply! Yeah, I’ve seen that list of doctors and my doctor is definitely on it and has been for a long time. That’s why I made those comments about him and Biogen. That said, he’s still very knowledgeable and I still trust him to a certain degree. He runs a huge MS clinic so it would make sense that he’s working with pharma in some way, I guess.

      My first infusion is scheduled for the 24th and, believe me, I’m very aware of the huge risk if I don’t (or do!) get on Tysabri and the huge risk if I pick something else and the huge risk if I do nothing. Yay MS. 🤗

      I have a 47 year old acquaintance who had MS for years who was hospitalized and later died from encephalitis. To this day I have no idea what medicine he was taking for MS. I didn’t even know he had MS and he didn’t know I had it either (I keep my medical issues very private and it looks like he did the same). His mom mentioned he had it after he died. Whatever drug caused this, is his death tracked and put into their “count” of deaths caused by their drug? How do they determine what drug caused it or even if the encephalitis was caused by a drug at all? These are the things I think about.
      "It matters not how strait the gate,
      How charged with punishments the scroll,
      I am the master of my fate,
      I am the captain of my soul." ˜William Ernest Henley

      Comment


        #4
        Originally posted by DPL2014 View Post
        Thanks for for posting the links and thanks for your reply! Yeah, I’ve seen that list of doctors and my doctor is definitely on it and has been for a long time. That’s why I made those comments about him and Biogen. That said, he’s still very knowledgeable and I still trust him to a certain degree. He runs a huge MS clinic so it would make sense that he’s working with pharma in some way, I guess.

        My first infusion is scheduled for the 24th and, believe me, I’m very aware of the huge risk if I don’t (or do!) get on Tysabri and the huge risk if I pick something else and the huge risk if I do nothing. Yay MS. 🤗

        I have a 47 year old acquaintance who had MS for years who was hospitalized and later died from encephalitis. To this day I have no idea what medicine he was taking for MS. I didn’t even know he had MS and he didn’t know I had it either (I keep my medical issues very private and it looks like he did the same). His mom mentioned he had it after he died. Whatever drug caused this, is his death tracked and put into their “count” of deaths caused by their drug? How do they determine what drug caused it or even if the encephalitis was caused by a drug at all? These are the things I think about.
        I'm very sorry about your friend. Any firsthand experience like that is indeed totally sobering. I'm interested in hearing the other responses you get to your questions here, and wish you the best!
        All the best, ~G

        Comment


          #5
          Originally posted by DPL2014 View Post
          I have a 47 year old acquaintance who had MS for years who was hospitalized and later died from encephalitis. ... How do they determine what drug caused it or even if the encephalitis was caused by a drug at all? These are the things I think about.
          Yes, incidents of fatal encephalitis in patients on natalizumab are recorded. In my searches I’ve seen them in context with

          1) Having been on another DMT before Natalizumab
          2) Presence of the HZ (herpes) virus, which is one of the risks highlighted in the Biogen safety notes.

          I also see that 70 to 90 percent of the adult population in the US have the HZ virus.

          One study concludes:

          In view of a higher HZ incidence in patients treated with natalizumab and the serious complications reported, we consider longterm antiviral prophylaxis after HZ diagnosis appropriate in patients continuing to receive natalizumab.

          https://www.bcm.edu/neurology/pdf/poster_msc_Zoster.pdf

          I remember my neurologist asking if I have genital herpes, but I have no recollection of being tested for the HZ virus in general. If I’m putting the pieces together correctly, that seems like a good thing to do.

          All the best, G


          All the best, ~G

          Comment


            #6
            I am a Tysabri cheerleader...been on it since 2006-wish I could've been on it a year earlier. It has halted progression, given me QOL, my Mri's have maintained and some of the old got smaller or disappeared long ago. It didn't help my R leg (foot drop-so doesn't move well) and if a year earlier I would not have this sx. All in all I'm doing o k. I take vitamins C & E to keep up my immune system to fight off viruses. I've had maybe 3 colds in all these years, thank G-d that's it. I do take other vits to ward of ms I do aqua aerobics, eat fairly healthy-am 69 years of age.

            Good luck and best wishes
            Linda

            Comment


              #7
              So let me begin by saying I am a BIG proponent of Tysabri. I had infusion #100 in July and have never had an adverse event of any kind. That being said, because Tysabri modulates your immune system, UTI's are one side effect that I have heard of. Encephalitis or lung infections in regards to Tysabri, I've never heard of or read anything about.

              Current research has found that aggressive treatment of MS is preferable to a gradual escalation in DMD's; the infusions are now considered Tier 1 treatment and preferable to daily pills (Tier 2) or injectables (Tier 3).

              Although I am also JC-, I have moved to extended infusions, and this year I will have only 8. Since I have all my IV's put in the vein inside my right elbow, this will help preserve my lonely vein; however, I've never had any difficulty in the vein's repetitive use. Extended infusions (once stable on Tysabri) have shown no reduction in efficacy and have reduced the risk of PML by 94%.

              Since Tysabri remains in your blood system for up to 12 weeks, I haven't heard any recent problems with rebound. From what I've read, people have made the move to Gilenya and Ocrevus with no problems.

              Hope this answers a few of your questions.

              Comment


                #8
                Although my MS symptoms are mild, I did have one relapse while taking Tecfidera which has left me with some permanent sensory issues. Once again, not serious and I am grateful for that. However, I would love it if I didn't have this numbness. But I can't go back in time. However, I am completely stable on Tysabri and I can't help but wish that I had just started out with this drug. However, Tysabri is only covered (where I live) after you have "failed" on one of the other drugs. Personally, I've never had any issues at all on Tysabri, but I am very healthy otherwise and not prone to any kind of infection.

                Comment


                  #9
                  Tysabri

                  Hey guys! Thanks for all the replies. My first infusion day is approaching (friday) and I've become a researching fool. Going to try to respond to everyone here.

                  Gargantua: I don't have HZ but isn't HZ the type of thing where you can be a "carrier" and not even know you have it (no symptoms)? Maybe I will get tested, but honestly it doesn't change anything. I've decided to go with Tysabri no matter what at this point. Please keep your fingers crossed for me! :-)

                  LindainColorado: I'm going to look into taking vitamins. I already take vitamin D and C and I rub vitamin E on my skin after every shower, but if taking more will help with not getting sick then I will. I usually get a sinus infection to start off Fall allergy season every year, but that's it as far as sicknesses go. UTI's scare me. I think I've gotten 3 of those my entire life (I'm 43) and I work in a hospital so I don't want to get that or any other infections. Are you JC - or +?

                  Ru4Cats: I asked my neurologist about extended dosing and he said I'll go once a month for the first year and once every 7-8 weeks the next year, depending on how my MRIs look. I'd like to do the extended dosing sooner, but if I schedule the infusions later and later then I'll control that on my own in a way, no?

                  Sarabeach: don't be to hard on yourself. Woulda/shoulda/coulda, you know? I started on Rebif and had I started with Tysabri I'd probably be thinking "why didn't I just start with something smaller first??" I'm still hopeful that my right eye will recover this last bout of optic neuritis but it hasn't completely recovered yet, so I hear you about the MS leftovers. Just want to keep my other eye 20/20 at this point, if I can. So I'm gonna fight for it.
                  "It matters not how strait the gate,
                  How charged with punishments the scroll,
                  I am the master of my fate,
                  I am the captain of my soul." ˜William Ernest Henley

                  Comment


                    #10
                    Just entered my 8th year on Tysabri. No new lesions, shrinkage of largest lesion at C6 by a third. My residual symptoms from earlier relapses remained, but Tysabri stopped my progression. I too wish it had been an option for me from the beginning.

                    I am JCV negative, still every 28 days. Yearly MRIs, 2x/year JCV test, and constant other blood work to check white bloods cell counts, liver, etc... Every month, taking some blood prior to infusion.

                    In the last 5 years, averaged 1-2 bad respiratory infections a year. I added Vit. C and E at Linda's advice, so keeping my fingers crossed. I did have 2 UTIs this year, my first since starting Tysabri. Both before I started the vitamin regimen.

                    As for the veins, I did wind up with some scarring in veins. I had a port put in about 5 months ago. So far, so good.

                    Good luck this week. Make sure you stay hydrated, eat before it. Let us know how you make out.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      DPL2014,

                      I get a jcv test approx every 2 months. I go between .20-and .26. .20 is neg and .40 is positive. I go with I'm in the indeterminate place - my Dr calls it positive. And yes I have gone from positive to negative ?? My Biochemist son thinks it's how well my immune system is working..

                      I have had 123 infusions
                      Linda

                      Comment


                        #12
                        Originally posted by DPL2014 View Post
                        Hey guys! Thanks for all the replies. My first infusion day is approaching (friday) and I've become a researching fool. Going to try to respond to everyone here...
                        Good Luck DP. The main thing I did before and after infusion #1 was to drink a lot of water. And that night, I slept great. It feels good to be doing something about this and I wish you the best.

                        Gar
                        All the best, ~G

                        Comment


                          #13
                          DPL2014

                          Sounds like you have a great neurologist! He definitely has a handle on the extended infusion protocol; you are so fortunate because so many docs are still stuck in the injection era. We'll all be thinking of you on Friday. Like so many of us going in with trepidation, I'm sure you'll walk out thinking, "Is that all there is?".

                          Comment


                            #14
                            Originally posted by DPL2014 View Post
                            Ru4Cats: I asked my neurologist about extended dosing and he said I'll go once a month for the first year and once every 7-8 weeks the next year, depending on how my MRIs look. I'd like to do the extended dosing sooner, but if I schedule the infusions later and later then I'll control that on my own in a way, no?
                            Chiming in about this - I was surprised when on the phone, Biogen rep who was scheduling my next transfusion (because I was switching infusion sites) said "just make sure not to go beyond 6 weeks." This of course gave me the diabolical idea that I could extend it to 6 weeks myself. I'm almost certain my Neurologist would only notice after 6 months when we see each other again. Anyway, like you, I'm going to ask him face-to-face to agree on a clear plan for extending.

                            I've been thinking about you! Looking forward to hearing how it goes on Friday.

                            All the best, G
                            All the best, ~G

                            Comment


                              #15
                              gargantua,

                              Did the Biogen rep say why not to go beyond 6 weeks? I'm starting seven weeks with this month's infusion, and my neurologist approved this change.

                              Also, just a suggestion, but if you do move to extended infusions, move gradually by adding a couple days to each infusion. I noticed no difference at all.

                              Comment

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