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    start tysabri or wait?

    Hello,

    I am new to this forum. I am 28 years old, female, my MS was diagnosed 9 years ago. My first relapse was numbness/sensatory problems in both legs, it recovered. The first five years I had rebif and avonex and in that period I had one relapse with balance problems, I fully recovered.

    In the past 4 years I took tecfidera. First tweo years I was free of relapses and any MRO activity. After a heavy coughing infection I got one light relapse in these four years with one new 3mm lesione.

    But this year I suddenly had two relapses within three months, stiffness in my leg later in my hand which was quite scare, as for two weeks I could hardly use that hand. Both fully recovered with prednisolone influsions.

    Now the doctors say I should go on Tysabri as my JCV is negative. But the weird thing is, my new MRIs both spinal and brain do not show any new lesions and no activitiy. The brain has no new lesions since last year (the year before it had this one new 3mm lesione that I mentioned above). And in the spine the doctor even says he doesnt see anything new since 2009! I dont really get it because the relapses were quite string compared to what I new before.

    I also have to mention that this year I had the most stressful period of my life because I am in the finishing period of my PhD. But this will be over in a few weeks.

    Do you think I should stark Tysabri now or take another MRI in a few months and see if I stabilize once the stress is over?

    I am JCV negative, so the PML would not be an issue for now. However, due to my job I was always spending longer periods abroad working in other institutes (sometimes three months, sometimes a year). With Tecfidera I could always take it with me and was very flexible, but Tysabri I can get only at home, I guess (Germany). I know its available in many countries but I don't think the insurance covers it aborad. Of course, health is more important !!! And as I understood, shorter travels up to 4 weeks will still be possible.

    I am now feeling completely free of symptoms, I excercise, eat healthy, supplement Vitamin D and take my Tecfidera. But of course, the relapses from earlier this year worried me. On the other hand, the MRI was quiet and the very specific dissertation-related stress will be over soon.

    I find that such a difficult decision to make. I am worried about the rebound. Once I stop Tysabri I will have to go on a (probably stronger) medication immediately as far as I understood.

    Difficult decision Maybe someone can give me some ideas about what you think.

    Thank you! Have a good weekend!

    #2
    So, I certainly can't answer your question on whether to switch to Tysabri or not, but I can tell you my experience.

    I've had 101 infusions of Tysabri and love it. I consider it the Cadillac of MS meds currently on the market. I have had no relapses, no new lesions, and for me, it has been an extremely easy drug to take. I have had NO side effects: none, nada, ziltch.

    Stress certainly can be a strong factor in affecting certain individual's MS. I'm convinced a stressful year is what triggered my MS. However, I would certainly take your MS doctor's recommendations into consideration. MRI's are a snapshot in time and have been known to miss recent activity. Relapses are usually a sign of this.

    Tecfidera is a tier 2 drug, not quite as good as Tysabri which is a tier one. One thing to consider is that new research shows Tysabri infusions can be extended beyond 28 days once you are stable. Even though I am also JC-, I decided to make the switch, figuring if it worked for JC+ people, it would also work for me. I have made the transition from 28 days to once every 49, and I love it! Since I have to travel 110 miles roundtrip for each once, I have enjoyed the extension. Here is the study:

    https://www.mdedge.com/neurologyrevi...mab-associated

    Hope this adds to your data. Good luck on your decision.

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      #3
      I am also on Tysabri, 8th year. Stopping is something that does worry me. Then again, I wonder if have moved out of the inflammation stage of MS anyway. Or is it just Tysabri doing it's job. Still JCV-, still every 4 weeks. If I go an extra week, I feel it.

      I am not sure if any studies have been done for those that stop Tysabri and use Ocrevus or Lemtrada next, and if it helps with the rebound effect. Maybe a question for your neuro?

      There are a few thoughts on lesions and why they may not show following a relapse. One is that they may be too small for current MRI technogy. The other is that some studies have shown lesions appearing and disappearing over time lapsed pictures. So if not caught at the right time, nothing shows.

      Since you are a young female, one other conversation to have with your neuro is future pregnancy, if that is something you want to plan for.

      It is a risk assessment that is very personal. Good luck with with your PhD and your decision.
      Kathy
      DX 01/06, currently on Tysabri

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