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Some questions about Tysabri

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    Some questions about Tysabri

    I just got the diagnosis in June of last year and started Tecfidera in August. My latest MRI showed quite a few new lesions in my brain (I only had one visible lesion when I was diagnosed). My neuro is going to get another MRI in 4 months then make a decision about possibly switching to Tysabri. I will go in sometime soon to get the JC virus test.

    I am wondering about what the infusions are like and how long it lasts and can you go back to work right away? I don't like the idea of missing work once a month - would it be feasible to get the infusions in the morning and be back after lunch, for example? No one at work knows about my MS, so getting this time off will be awkward. And it would be harder to explain monthly absences.

    #2
    My first few infusions took 3 hours, but now I'm in and out in 2. For me, Tysabri has been a wonderful DMD. Day 1 is just like day 28. I have no reactions to the drug; none, nada, zilch. I hope you test JC-. Tysabri has the strongest efficacy of all the currently available DMD's.

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      #3
      Hi Guys I have been on TY for 6 months ,infusions and no problems other than being tired after the infusion for the next day but no side effects my last MRI came back positive lesion had shrunk slightly and I am JC- good luck Craig

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        #4
        The Tysabri takes 1 hour and then they keep you for 1 hour observation. Depends on how quickly they can get into your vein. I suggest you are well hydrated. I have not had a side effect in approx 108 infusions and some infusion centers don't keep you for observation (mine) after a certain amount of infusions-depends on your infusion center's protocol.
        Linda

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          #5
          When I first started Tysabri, my employer would let me make up the time, so I went to Infusion and worked after from home. I actually used to work from the Infusion center as well, using their WIFI.

          At the time, I told my boss I had a medical condition that required an infusion every 28 days. I didn't say MS. We did the unofficial thing for a bit, but then suggested we put in an official accommodation so I would have no issues in the future. The accomodation didn't say MS, allowed me to make up the time anytime during the week, and my neurologist just said a medical condition in his paperwork.

          Eventually, I had to disclose for another reason, then put in the request for intermittent FMLA. It allowed 1-3 days per month for Infusion, medical appts, PT, etc. . . and could be used in 2 hour increnents. My boss continued though to let me make up time.

          I was progressing more rapidly before Tysabri. It really helped and slowed things down. I actually had some recovery of function in right arm and with bladder issues. My MRIs have been stable, with the 2 largest spinal lesions actually reduced in size after 6 years showing as same size pre-Ty.

          As for what to expect, it can vary by Infusion center. The first 3 years, I was at a hospital center, which my neuro was affiliated with. It always took 3 hours minimum and all by the book, scheduling was pretty easy due to their capacity capability. I had my own room, with TV and guest chairs. They provided lunch or breakfast too!

          The past year, I switched neuros, and he has an infusion center. It is much more personal, as same nurse each time. She has 3-4 patients going at a time, all in the same room, but scheduling can be a little harder. The plus side is I have met so many more people with MS. The down side is if you want to sleep, work, or read, may not be able to. I am always done in 2 hours, but my new neuro requires testing each time. So that takes about another 15 minutes(3 tests - 25 foot walk, peg hole tests, and then a math related test).

          If you let the Infusion center know you are working, they hopefully will give you either the earliest am, or latest PM slot to minimize your time.

          As for side effects, I had none for a long time. As Linda said, stay hydrated. An not just the day or two before. Stay hydrated all month. I struggle now with MS Fatigue, so the Infusion and day after, really tired.

          Good luck. I hope your MRI stabilizes, but if not, Tysabri is great. I am fortunate to still be JC negative.
          Kathy
          DX 01/06, currently on Tysabri

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            #6
            I've had 8 infusions so far and I'm in and out. I don't feel any different and after the first 3 infusions I don't have to stay. The infusion takes an hour and the time before and after setting it up and taking it out is about a half hour. So I'm in and out with in and hour and 1/2. I also was concerned that the infusion would put me down for the day but they don't. I'm the same before and after.

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              #7
              Thanks everyone, I won't even know if I have to switch to tysabri until my next MRI in September, so I realize it is no use worrying about it until I know for sure. But my biggest fear is the idea of having to take time off work. I don't want to have to tell my boss - and I feel like he would hold it against me - totally illegal I realize - but still a concern of mine. Also, I don't want everyone else at work to know why I am taking a day of work every month - and I can't just make something up. Again, really I shouldn't be worrying about it because there is really nothing I can do until I know for sure if I have to switch. But knowing that I shouldn't worry about it doesn't really help me not worry about it! A very frustrating cycle!

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                #8
                hi there.

                When people first start Tysabri, Biogen gets involved and often helps identify an infusion center.

                Some infusion centers have evening and weekend hours (mine does). Try to see if you can get one of those near you.

                Sometimes at first a center will require you to do your first few infusions during the day when they can more easily reach a doctor in th event of a complication. But if all goes well (and it usually seems to for most people), then you can switch to evening or weekend hours.

                If you have lots of new lesions on Tecfidera, that seems like a reason to switch sooner rather than later. You might look into making the switch before your next MRI if you are a good candidate for Tysabri. (JCV -). Tysabri tends to stabilize MS in a way that other drugs don't.

                I also have not disclosed at work and don't want to for the same reasons you gave.

                Good luck!

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                  #9
                  Originally posted by chatmagique View Post

                  I also have not disclosed at work and don't want to for the same reasons you gave.

                  Good luck!
                  Just an FYI, if you work at an employer that legally is required to offer FMLA, your neuro can fill out an intermittent FMLA request without disclosing your medical condition. Just that you need x number of hours per month for medical appointments. Some employers will make you use vacation or personal time for FMLA, some will do unpaid.

                  I hope you never need it, but it is important to understand you don't need to disclose your actual medical condition. Additionally, your boss is supposed to keep it confidential, so unless you say why, your coworkers should not know.
                  Kathy
                  DX 01/06, currently on Tysabri

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                    #10
                    With my previous employer they knew it. I was actually out for about a month when first diagnosed. We had my schedule at work so that I was off on Mondays so I did my infusion on Mondays. That job fired me in April. I was out of work from the end of April until almost the end of August. Now where I work it is a little hard to get off for the infusions. I actually am having to change my next infusion from Friday to Monday.

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                      #11
                      I am going to be switching - just not sure when - sometime in the next couple of months - still unsure about what to tell my boss, but I guess I am going to have to figure it out soon!

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