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    #16
    Originally posted by daisy.girl View Post
    My understanding is that IRIS is only IF you develop PML. That is what the people at Biogen told me.
    Good point---i think 2 topics are being discussed here--and they are not the samme.

    the rebound effect & IRIS.

    the rebound affect happens to 40% of people when stopping TYsabri- it causes a persons ms to be more active than when they started tysasbri, makes it important to get on a different med as soon as possible when stopping ty.

    IRIS i think does require pml i think.

    IRIS happens when the immune system can enter the brain again after tysabri had prevented the immune system from getting into the brain.
    the immune system gets back into the brain and finds the jc virus there & start attacking the virus, but while attacking the virus some brain tissue is also damaged.

    there is going to be some damage to the brain when the immune system starts fighting the JC virus. the damage can be minor, moderate, & severe to death.


    the europeans were the first to keep a patient alive through IRIS, they just put people in life support while the immune system was attacking the jc virus. people then survived the virus attack, some had mild or moderate disabilities after getting off life support,some had severe disability including being bedridden, with loss of cognitive skills..
    xxxxxxxxxxx

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      #17
      Daisy -
      You are correct. I sometimes post without rereading what I have posted, bad habit.

      The rebound effect and IRIS are two different things. My doctor went right into talking about IRIS after informing me about the rebound effect, and I was so mad I sort of tuned her out.

      Sorry if I confused you.

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        #18
        IRIS?????

        i've been on Tysabri since 2006 and this is the first time I've heard this term...what IS IRIS??

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          #19
          IRIS = IMMUNE RECONSTITUTION INFLAMATORY SYNDROME

          patients who have developed pml, after tysabri is removed the immune system reconstitutes characterized by severe inflamatory respnse that can happen during or following immune system recovery causes an unexpected decline in the patients condition after the imune system function returns..
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            #20
            I had 20 infusions(no symptoms or exacerbation at all during this time) and then had to go off in Aug. due to positive JC virus titer. It took longer than expected to get started on Rebif and I had an exacerbation in Nov. Started Rebif in Dec. and I am now having another exacerbation, which has been the longest lasting I have ever had. I will be asking my neuro about going back on Tysabri as it is the only med. that has really worked for me.

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              #21
              ty to copax. now 3 lesions later what to do?

              I 2 had been on ty for 2 years - was sugsted I come off where jc virus was discovered in urine. Do you know where your JC Virus was blood or urine?? We also had a case of PML in my dr org so they have been pulling everyone. I was doing bautifully on it. -Had a 3 month cool down and start copaxine - Now I can't walk a straight line and fall over everywhere

              So I'm back to solumedrol for the weekend but I'm curious

              Has anyone been taken of ty for jc virus in urine and then later come back to it?

              My other option is glynia but I was doing so well with TY I'm not sure which way to turn

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                #22
                I stopped Tysabri after only 2 infusions. I felt unwell after my first one, decided to have number 2 (felt crap again) but by this time I was having a bad flare (MRI showed new lesion and old ones showing up badly again) and ended up having IV steroids, then within a week I got shingles and couldnt have number 3, felt so sick, had to fly to UK to visit my mum who has steroid induced psychosis, by the time I got back (had very traumatic time in UK long story) I was feeling depressed, was worried about the JC virus (being herpes related and shingles is too) saw neuro and told her I wanted to back on copaxone. I have been back on it for 3 weeks and feel great finally. Who knows if its psychological, but for me I feel better about my decision.

                Jo

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                  #23
                  My Experience With Stopping Tysabri

                  The neurologist tend to wait until it's too late before they provide the insight that stopping Tysabri is problematic. Tysabri is a "Beta" drug, they really don't know enough about this drug but they do know if you have MS you become desperate to find something to stop the progress and they CAPITALIZE [pun intended] on that.

                  I was told a couple of years ago that I'm JC positive, which means I'm more likely to develop PML. Recently they've discovered how likely by a blood test and that my likelihood measures 4.9 and they don't want you higher than .9

                  Yee-ha since I'm now stopping Tysabri I'll have to go through 4 weeks of Solu-Medrol 3 times a week, who knows what happens after that.

                  The moral of this story is to have your doctor find out if you are JC positive and at what level. And then long and hard about starting this drug.

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                    #24
                    Copaxone

                    Originally posted by lorib View Post
                    Ahh, I hope not! My last infusion was 2/09 and I'm switching to Copaxone so I can get pregnant later this year. I just emailed my neuro about starting copaxone and he said to start it "ASAP". I wonder if that's because you are likely to have an attack after stopping Ty. . .

                    Sorry this isn't more helpful
                    Hi, can write me how are you doing now? Are you still on Copaxone? Thnx.

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                      #25
                      From what I understand from my reading (and which my neuro confirmed) there's a risk that your MS will rebound after stopping Tysabri, but by "rebound," they mean "return to the state of activity you had prior to Tysabri."

                      That may be cold comfort to some who went on Tysabri because of very active disease, but I don't think you should expect to be worse than you were prior to starting it.

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                        #26
                        Originally posted by PISKOTA View Post
                        Hi, can write me how are you doing now? Are you still on Copaxone? Thnx.
                        Took me a minute to remember posting that! I have not relapsed since summer of 2009 so maybe starting Copaxone right away worked. I ended up conceiving my son in August, which was exactly 6 months after my last infusion. He's fine and I'm doing well on Copaxone but will be switching to Tecfidera.
                        Lori
                        Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

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