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    I'm joining the club...

    Yep, starting Tysabri, probably in October. Waiting for the TOUCH program to "get in touch" with me.

    This will be my first experience with a DMD of any kind. My MS is aggressive and advanced. I am JC -, which is good.

    So, I will be putting my two cents in regarding Tysabri in the coming months.

    What am I hoping for? Reduce fatigue, slow progression of physical deterioration.

    What I don't want?...besides PML, to feel worse than normal.

    I hope it works.

    #2
    Good luck, Windwalker. I am two weeks away from infusion #55, and I absolutely love Tysabri. It is the only DMD I've ever been on.

    I'm still JC- after at least 6 blood tests (I've lost count !). I've had at least 6 MRI's, and the recent still showed no new lesions, no active lesions. Day 1 is just like day 28.

    I hope you, at least, can stabilize, and with luck, depending on your age, maybe improve. I was too old for the latter, but I'm content since my symptoms are way less than many others. I keep reading what others experience with their drug choice, and get the heebie jeebies!

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      #3
      What a great club to be in!

      I hope it works for you as well as it has worked for me.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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        #4
        ...still waiting for Ins. approval

        Saw the Neuro. Sept. 3rd. Got the ball rolling on Tysabri...
        Got my "care package" from Biogen, talked with case managers at Biogen several times. The infusion center is still waiting for insurance approval.

        What is normal time from Neuro. recommendation to first infusion? That it appears to be taking some time, should I be worried?

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          #5
          Each of my DMDs have taken about 1 - 3 weeks.

          Personally, I would call Tysabri Active Support...they will get back in touch with your insurance company or let you know exactly what is going on. I'm actually surprised they did not stay on top of it...I was getting daily phone calls.

          They are getting paid a lot of money for your infusion...believe me...they want you to have it.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

          Comment


            #6
            Originally posted by KatieAgain View Post
            Each of my DMDs have taken about 1 - 3 weeks.

            Personally, I would call Tysabri Active Support...they will get back in touch with your insurance company or let you know exactly what is going on. I'm actually surprised they did not stay on top of it...I was getting daily phone calls.

            They are getting paid a lot of money for your infusion...believe me...they want you to have it.
            Thanks KatieAgain,

            Biogen has been great but they keep getting told that insurance approval is needed. I need to call the insurance company at this point...kind of dreading it...might be bad news.

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              #7
              First infusion...done.

              Monday I had my first Tysabri infusion. It went well, the people were very nice. It was a small, comfortable infusion room with 3 chairs.

              So far, the effects have been minor. Really no negative side effects...maybe a little tired for a day or two, slightly "head achy" ...but I'm really nitpicking at this point.

              At times I feel really good. The PT session on Thursday went very well. It's only been 5 days, I'm pretty sure as time goes by I will get more of a reaction, one way or another.

              What were some of your experiences in the first week?

              Comment


                #8
                I'll be watching too

                Hey Windwalker, I'm starting too next week. It only took two days for me to get my infusion scheduled after the neuro ordered it and I understand that is because I now have a "Cadillac" insurance plan after several years with no insurance and I have the POTUS to thank for it. Of course the new majority may take it away from me. We have no subsidies helping us pay for it, I just chose a good plan and I'm so grateful to POTUS.

                My neuro office said they were surprised pre-authorization wasn't even required. It was just an automatic thing, like I was in the senate or something. LOL. You like I was created equal to politicians!


                **Wording changed in compliance with MSWorld Guidelines**
                ---------------
                "It's never crowded along the extra mile." --Dr. Wayne Dyer

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                  #9
                  I got a headache the first time as well. I slept afterwards...made me a little tired. I am actually a little tired after every infusion...but there were additional protocols put into my treatment. I got infused yesterday...4.5 hours...so that adds to the exhaustion.

                  I truly hope this works for you...it has helped me tremendously. A few bumps, but overall improved my QoL ten-fold.
                  Katie
                  "Yep, I have MS, and it does have Me!"
                  "My MS is a Journey for One."
                  Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                  Comment


                    #10
                    I've never had any reaction, to speak of, from Tysabri. Day 1 is just like day 28, and I go about each day just living life. I'm sure you know it takes 6 months for the Tysabri to reach "saturation" in your system. During these 6 months, the week before your next infusion, you might notice the "Jonesing effect", a need for the next infusion as the drug is wearing off.

                    Studies say it also can take up to 3 years for the most positive benefits from Tysabri to appear. I'm just beginning year 5, and I'm actually thinking I'm still getting positive effects (or at least negatives stabilizing or not getting worse).

                    Good luck. This is really a wonderful drug.

                    Comment


                      #11
                      Good luck! I had my first infusion almost a month ago, some side effects yet handled them. So far so good, nothing new though as far as improvements, yet it's far too soon to tell.
                      Jen Dx'd 5/11
                      "Live each day as if it were your last"

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                        #12
                        First infusion today

                        On a stretcher, early in the morning, with three cups of cola and watching 3:10 to Yuma.

                        Then back to the nursing home and PT/OT - at least they didn't put me on the tilt table. But I didn't sleep well last night, up at six, bumpy stretcher ride in ambulance to Touch center, bumpy ride back, then multiple sliding board transfers to wheelchair cause of broken ankle on good leg, exhausting but fun PT/OT, now I'm ready to sleep in but OT gal is coming at 8am!

                        But so far, no side effects. But I'm so tired, not sure I'd be able to tell.
                        ---------------
                        "It's never crowded along the extra mile." --Dr. Wayne Dyer

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                          #13
                          Post treatment: Week 3

                          I'm sleeping a lot later in the morning, that's for sure.

                          Still very fatigued at night.

                          Found out it comes with a $200 month co-pay. Ouch!

                          Time to return Biogen's calls methinks

                          Good luck to those just starting out on this journey with me.

                          Comment


                            #14
                            Two weeks after 2nd infusion

                            Feel like there is improvement in ways very hard to describe or measure. I have cut down on pain med's probably because I am in less discomfort.

                            However, in some very measurable ways I am still the same and have had mild side effects:

                            Sleeping in much later in the morning.
                            Frequent upset stomach.
                            Mild headaches.
                            Cog fog in the evening.

                            Spasticity and involuntary spasms about the same.

                            3rd infusion 12/29.

                            Comment


                              #15
                              Clearly it is making a difference...something's different.

                              Wow, 5th infusion yesterday. Went into it on a power surge, which I know is contrary to what is expected. Went to a movie Saturday, Comedy Club on Sunday, infusion Monday...phew.
                              Last PT session stood for 7 minutes. Not just standing, shifting weight from right to left. Total of 19 min. of weight shifting standing over 4 stands. 18 months ago I never made it to 5 minutes.
                              Feel like there is more progress to be had.

                              Still get abdominal pain, stomach discomfort after infusion.

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