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    #16
    Originally posted by ru4cats View Post
    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.
    Before answering this, I called Biogen support to verify what I remember. The rep I got said "The recommendation is to get your infusion every 4 weeks. If you want to extend your dosing, talk to your doctor," like they were reading from the medication guide.

    To be fair, in the past 3 weeks I've talked with both Biogen support and a new independent infusion center scheduler with my calendar in front of me, scheduling the next infusion. When I go next week, I will see if it was the infusion scheduler who said it and report back. I do not want to spread misinformation!

    ru4cats, thank you for recommending the tapering - I am grateful for your hard-won advice.

    G
    All the best, ~G

    Comment


      #17
      Originally posted by gargantua View Post
      Before answering this, I called Biogen support to verify what I remember. The rep I got said "The recommendation is to get your infusion every 4 weeks. If you want to extend your dosing, talk to your doctor," like they were reading from the medication guide.

      To be fair, in the past 3 weeks I've talked with both Biogen support and a new independent infusion center scheduler with my calendar in front of me, scheduling the next infusion. When I go next week, I will see if it was the infusion scheduler who said it and report back. I do not want to spread misinformation!

      ru4cats, thank you for recommending the tapering - I am grateful for your hard-won advice.

      G
      Adding to my previous post, I don't think based on what I heard that it should be assumed anyone said its dangerous to go beyond 6 weeks. My impression was more like the scheduler was saying they didn't schedule out past 6 weeks and there was some underlying reason for that (like the doctor would have to be involved?). I am sorry if I have caused any concern with bad semantics.
      All the best, ~G

      Comment


        #18
        Hi DPL2014,
        Been on Ty for almost 7 years. Am jc +. only had last titre check a couple weeks ago and level has only risen a tiny amount so have been ok'd for another yr of Ty.
        When i have infusion i feel a bit achey and tired for about 16 hrs or so. I usually spend the afternoon watching tv and snoozing.

        Had ms for almost 35yrs. took interferon beta 1b for about 5 years in my 30s and i wouldn't recommend that. Ty has been an easier treatment to cope with than it.
        No one at the infusion centre have any problems with it. One lady calls it her go go juice and she says she feels more energised after treatment.

        I was nervous before 1st infusion but it doesn't continue. If you're going to have problems it'll be in the initial stage and after that its just a matter of keeping tabs on titre levels and blood work.
        Best of luck.
        Caroline

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          #19
          1 down!

          Hey guys!

          Hope you're all having a good Sunday! So I had the infusion on Friday and got a little headache later that night, but that's it! I actually felt pretty good directly afterwards.

          This morning I noticed an itchy spot on the outside of my left leg. They said to call if I noticed any strange rashes so I may call them tomorrow. I hate to do that because it's probably nothing...

          Other than that, so far so good. Still worried about all the other side effects (general illnesses, UTI, Liver, etc.) but I made this choice and I'm sticking with it until I'm told I can't. Thanks for your encouragement and advice Gargantua, pennstater and ru4cats.

          Caroline: I was taking that too, I think? Is it rebif? I was on it for 3 years. It worked great til it didn't. Oh well. I get sad about the spot in my vision on my left eye and then I remember my right eye is still working and that's more than a lot of people have. I hope things work out for you for years to come.



          DPL
          "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


            #20
            Congrats! Glad 1st one went pretty well.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #21
              Originally posted by DPL2014 View Post
              Hey guys!

              Hope you're all having a good Sunday! So I had the infusion on Friday and got a little headache later that night, but that's it! I actually felt pretty good directly afterwards.

              This morning I noticed an itchy spot on the outside of my left leg. They said to call if I noticed any strange rashes so I may call them tomorrow. I hate to do that because it's probably nothing...



              DPL
              Super glad to read your update and congratulations. It's such a big decision but such a relief when you cross that line. I'm going for #2 on Friday afternoon, will post any anomalies.

              All the best,

              G
              All the best, ~G

              Comment


                #22
                Reporting In - Independent Infusion Center

                Had the second Tysabri infusion yesterday at an independent infusion center called Infusion Express, which some may know of. I was reticent about going to a placce 20 miles away, after my first infusion in the hospital infusion center just 10 minutes from my house had been so easy and uneventful ( but I’m sure expensive ). The independent infusion center ended up being beautiful and well-run, with a very experienceed nurse and staff. I think anyone can rest assured independent infusion centers are very nice (at least one of them is!).

                This being infusion #2 I had never been asked “did you notice any problems with balance” with the caveat that if I did, they would put the brakes on Tysabri. I thought about it a lot. It has been warm at times here and I know I have felt wobbly now and then. I decided it was not PML and pushed forward. I will personally journal more regularly this month if I notice anything day-to-day. Otherwise the infusion was uneventful, just like one hopes.

                People say they get tired as their infusion date approaches. That did not happen for me. However on this saturday at 11:44am I do feel like a nap!

                All the best,

                G
                All the best, ~G

                Comment


                  #23
                  gargantua,

                  2010, I actually started out at an infusion center affiliated with a hospital: $11,000 and change per infusion. Because I had such a terrible experience, I moved to an infusion center affiliated with home health: $3700 and change. I was there until I reached Medicare age in 2017 and had to move to a hospital, but I chose another hospital. New cost if $6000 and change.

                  Comment


                    #24
                    Originally posted by ru4cats View Post
                    gargantua,

                    2010, I actually started out at an infusion center affiliated with a hospital: $11,000 and change per infusion. Because I had such a terrible experience, I moved to an infusion center affiliated with home health: $3700 and change. I was there until I reached Medicare age in 2017 and had to move to a hospital, but I chose another hospital. New cost if $6000 and change.
                    Congratulations ru4cats. On top of the MS itself, the bureaucracy end economics are so much to think and worry about. You’re a true warrior!

                    All the best,

                    G
                    All the best, ~G

                    Comment


                      #25
                      Woo-Hoo!

                      Originally posted by gargantua View Post
                      Had the second Tysabri infusion yesterday at an independent infusion center called Infusion Express, which some may know of. I was reticent about going to a placce 20 miles away, after my first infusion in the hospital infusion center just 10 minutes from my house had been so easy and uneventful ( but I’m sure expensive ). The independent infusion center ended up being beautiful and well-run, with a very experienceed nurse and staff. I think anyone can rest assured independent infusion centers are very nice (at least one of them is!).

                      This being infusion #2 I had never been asked “did you notice any problems with balance” with the caveat that if I did, they would put the brakes on Tysabri. I thought about it a lot. It has been warm at times here and I know I have felt wobbly now and then. I decided it was not PML and pushed forward. I will personally journal more regularly this month if I notice anything day-to-day. Otherwise the infusion was uneventful, just like one hopes.

                      People say they get tired as their infusion date approaches. That did not happen for me. However on this saturday at 11:44am I do feel like a nap!

                      All the best,

                      G

                      Sorry it's taken me so long to post...work's been nuts. Glad all went well with #2, Gargantua! I've scheduled my second one for the end of the month, so we'll see how it goes. Interesting that they asked about balance?? Are you sure they are asking that because of PML? People don't usually get PML after two infusions, right? Especially when JCV-? Hm. I get my infusions at my neuro's office since it's an MS clinic and infusion center. I have that $0 co-pay thing Biogen does, thank goodness. You guys are an inspiration. Please keep posting about your experiences. Gargantua: have you had any blood tests since the first one to check liver function, etc?
                      "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


                        #26
                        Originally posted by DPL2014 View Post
                        Sorry it's taken me so long to post...work's been nuts. Glad all went well with #2, Gargantua! I've scheduled my second one for the end of the month, so we'll see how it goes. Interesting that they asked about balance?? Are you sure they are asking that because of PML? People don't usually get PML after two infusions, right? Especially when JCV-? Hm. I get my infusions at my neuro's office since it's an MS clinic and infusion center. I have that $0 co-pay thing Biogen does, thank goodness. You guys are an inspiration. Please keep posting about your experiences. Gargantua: have you had any blood tests since the first one to check liver function, etc?
                        I finally asked the nurse point blank, “do people waffle on this answer because day-to-day I always have balance issues so I can definitely say YES.” And then she just sat there and I said “do people get PML on the 2nd infusion?” and she said no, but it took her about five seconds to say it. It is a fact proven with current data that people do not usually get PML after 2 infusions which is why they say they watch for it more carefully after 2 years. However, they ask those questions and hand you the InTouch Tysabri Medication Information every time you have any contact with anyone or anything involving your Tysabri. It’s all about them being worried people will litigate if they get PML. And that to me as a patient is very discouraging. If not for all the real-world data and my own general good health I would not be on this if only because of the constant absolvement of responsibility on Biogen’s part that I have to acknowledge. But if you look at it another way, they may actually be trying to take care of us

                        They did a blood panel after my first infusion and the nurse said they were going to do it every time. But they didn’t do one at the infusion center.

                        Thanks for your updates DPL2014 and I’m glad you’re doing good.
                        All the best, ~G

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