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    start tysabri or wait?

    Sorry I posted this first in the "Tysabri" sub section but I think it fits better in the general "Medicaton & Treatment" section! Sorry for double posting.

    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 two years there were no relapses and no new MRI activity. After a heavy coughing infection I got one light relapse in 2017 with one new 3mm lesione.

    But this year I suddenly had two relapses, stiffness in my leg and a few weeks later in my hand. It was quite scary because I was almost unable to use the hand for around two weeks. 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 MRI shows no new lesions since last year. In the year before I had that one 3mm lesione that I mentioned above.
    In the spine, they didn't even see anything new since 2009! I dont really get it as my relapses were relatively strong at least from what I had experienced before.

    I also have to say 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 start Tysabri now or have 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. However, due to my job I was always spending longer periods abroad working in different institutes (sometimes three months, sometimes a year). With Tecfidera I could always take it with me but Tysabri I have to get here, I guess (Germany). I know it is available in many countries, but I think my insurance wouldn't cover it abroad.
    Of course, health is more important, and I am willing to change my lifestyle eben though I loved longer stays abroad. But as I understood, shorter travels up to 4 weeks will still be possible, right?

    I am now feeling completely free of symptoms, I excercise, take Vit D and my tecfidera. But of course, the relapses 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.

    Me and my partner also want to have children in the coming years. My neuro said Tydabri would not be a bad option then since there is a lot of experience on tysabri patients + pregnancy.

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

    Thank you!

    #2
    They say, if once you will start taking the Tysabri, take it as long as possiblle. Cause once you will stop, you will notice deterioration. This was also my case. It was happened maybe because of at that time I switched from RRMS to SPMS. After I had canceled with Tysabri I went to steroids and Gylenia, but I did not improve my condition anymore.
    Also canceling Tysabri is linked with other risks.
    I think you should talk with your neuro about your plans and future and take his/her advice.

    Comment


      #3
      Hello StickyRice!

      I have been meaning to write but have been terribly busy; I have been thinking about you much, though.

      First, your doctors are concerned about the increased MS activity. Yes, stress can be a contributor but their concern goes beyond stress and they want to get a handle on MS progression.

      One of your concerns is receiving infusions out of country. Possibly you could work with your supplier and they may be able to ship it to an infusion center out of country. As long as it is kept cool in a well insulated container, shipped, and arrived still cool, there would be no problem. Also, as others have pointed out, extending dose past 4 weeks is prudent for many. My wife got infusions every 8 weeks and was just fine. But I have no idea what leeway doctors have in Germany where you live.

      Many times when someone is JCV- they remain on a 4-week infusion schedule. However, I think that is foolish for those who are doing well enough to extend time between doses. Why? For an exceedingly important reason... it is well established that people on Tysabri convert from negative to positive faster than the general population. So, the fact that some people who are JCV neg extend time between doses may keep them from turning positive and they can live w/o fear of PML. No JCV = no PML.

      Why Tysabri? I can honestly say that the years my spouse was on Tysabri were years when no one could even tell she had MS. Last year she switched to Ocrevus and now has more fatigue. Her energy level has changed, she sleeps more and gets tired more easily.

      You are young and just beginning a career. You need energy to work. Tysabri, of ALL the MS DMTs provides the best opportunity for having the highest level of energy. You should be able to find that info on your own but I can follow that up, if you wish. Bart's MS Blog is a great source of MS info, btw.

      Also, you can find a study on Tysabri and pregnancies posted in the Tysabri thread.

      IMO, the best chance you have for the most normal life possible is with Tysabri. My wife was on it from 2002 until 2017; it was taken off the market for one year when PML was discovered. Many people at this site have been on Tysabri a long, long time and done exceedingly well. Not everyone has success with it but many do. I agree with ru2cats, it is the best MS medicine available right now. JMHO.


      Best Wishes!!!! You will do well!

      Comment


        #4
        hi stickyrice,
        I also stand by the previous two responses advice.
        I have been on Ty for 7yrs now and am jc+ since day one.
        If you intend to have children you would like to be able to do as much as possible with them and Tysabri and Ocrevus have the best efficacy in regards to progression and disability.
        It is generally considered that tysabri has less side effects however.
        things can usually be arranged in regard to treatments overseas if necessary.
        It is your choice what treatment you choose.
        Once you have chosen the one that will achieve what you hope it will , then find out how to fit it in with your schedule.
        best of luck,
        Caroline.

        Comment


          #5
          Hello StickyRice,

          The following 3 titles involving Tysabri from the 2018 ECTRIMS beginning Oct 10 in Berlin may be relevant to your question about starting Tysabri or waiting. I list only the title and a very small amount of content for the sake of brevity. The titles are in bold. Plus, I highlighted a few lines in bold to draw your attention to them.

          1. Long-term effectiveness of natalizumab in multiple sclerosis: a 10-year nationwide prospective cohort study
          Abstract: P881
          Conclusions: Natalizumab was associated with reduced disability progression rate in relapsing-onset MS with even significantly higher effectiveness when initiated early.

          2. Natalizumab is associated with no evidence of disease activity and improved cognitive function and health-related quality of life in anti-JC virus seronegative patients with early relapsing-remitting multiple sclerosis: a 3-year analysis of STRIVE
          Abstract: P891
          Conclusions: In patients with early RRMS, natalizumab treatment over 3 years was associated with NEDA maintenance and improved cognitive and HRQoL (health related quality of life) outcomes. These results are consistent with previous work showing natalizumab's effectiveness when initiated early in the RRMS disease course.


          3. Early treatment with Natalizumab prevents cortical gray matter atrophy: a two-year prospective study in relapsing-remitting multiple sclerosis patients
          Abstract: P584
          Type: Poster Sessions
          Abstract Category: Therapy - Neuroprotection and Repair

          Objectives: To assess longitudinal effects of Natalizumab… on cortical gray matter thickness and cognitive performance in relapsing-remitting multiple sclerosis (RRMS) patients.
          Methods: A longitudinal prospective study. RRMS patients underwent 3.0T 3D high resolution brain MRI (Signa, GE) examination and comprehensive computerized cognitive assessment before initiation of Natalizumab and at 2 years of treatment, along with neurological assessments once every 3 months. FreeSurfer 5.3 was applied to obtain brain morphometrics and to perform paired, longitudinal, cortical thickness analyses.
          Results: Sixty RRMS patients, 44 Females, 16 Males, age 36.3 ± 9.3 years, disease duration 8.4 ± 6.0 years, expanded disability status scale (EDSS) score 2.6 ± 1.5, were included. Following 2 years of Natalizumab treatment… Patients who started Natalizumab treatment early (≤7.5 years from onset) exhibited no cortical gray matter atrophy (CGMA) while those who initiated the treatment late (>7.5 years from onset) exhibited significant CGMA in five focal clusters on the right hemisphere and in one cluster in the left hemisphere, p< 0.02. Under 2 years of Natalizumab treatment cognitive performance was stable with significant improvement in information processing speed score (+3.7%, p=0.011).
          Conclusions: We identified an early therapeutic window that is important to prevent CGMA in Natalizumab treated RRMS patients.

          Comment

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