Announcement

Collapse
No announcement yet.

Gilenya: Monitoring treatment efficacy

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Gilenya: Monitoring treatment efficacy

    Started Gilenya two months ago after discontinuing Tysabri after 5 years. Just developed new symptoms of speech impairment (dysarthria) and reported it to neuro.

    MRI two day later interpreted to reveal numerous active new lesions, confirming cause to believe presence of relapse. Neuro's response:

    1. Continue Gilenya.
    2. Report for 3-day infusion steroids followed by oral taper.
    3. Monitor symptoms for approximately six months to see if symptoms continue, improve, or new symptoms develop. Schedule follow-up MRI if symptoms do not abate or new symptoms develop.
    4. Obtain JC virus titer.

    I am in agreement with this treatment decision.

    Nevertheless, Neuro's secretary explained it is not considered a Gilenya fail since I've only been on it for two months, and it might be residual activity from going off Tysabri. I am not sure if I agree with this hypothesis because I did not have these symptoms post-Tysabri, nor while taking the steroids prescribed post-Tysabri to prevent Immune Reconstitution Inflammatory Syndrome.

    Anyone post-Tysabri and on Gilenya, I am reading about reactivation of MS progression in patients such as myself, manifesting in much higher new lesion load in the year following discontinuing Tysabri. Thoughts?

    #2
    I don't know about your treatment but I do know I'm coming off of tysabri in a couple months. I know I was told that I have to taper off of ot for four months instead of ever 4 weeks it goes 6 weeks then 8 weeks then on to gilenya. He was on the trail dr and said tysabri does have a rebound effect and he wants that not to happen. I hope this helps a little bit
    28 yrs old Diagnosed 2012

    Never give up!!!

    Comment


      #3
      Even with your steroids, IŽd be tempted to call it a rebound from the Ty. Please give the G a try- I went from Copaxone to G and finally- 9 months in had my first MRI without new lesions. It is easy to take and it does not have noticeable side effects.

      Comment


        #4
        Thanks. I'm almost off the steroids taper now and I am following the neuro's recommendations to stay on Gilenya. I like the convenience of not losing personal time from work so I can get Ty treatments. That really wiped out my time bank but I was just happy the Ty was working. I sure miss the peace of mind it gave me.

        But, the Gilenya has been kind to me where adverse side effects are concerned, so far, and for that I am grateful. Avonex totally wiped me out for the two days following a shot. I just hope Gilenya does what it's supposed to. Sometimes there is a thought I get that if the medicine doesn't cause me to feel anything (good OR bad) it might not be doing anything either.

        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

        Comment


          #5
          I just got solid evidence that Gilenya is doing something, at least for me.

          I had a chest cold. And I've been very tempted to switch to Tysabri because of the stories of improvement and energy. So I took a break figuring I probably needed more white blood cells anyway. Wasn't sure I would start again.

          Day one and two, no problem. By day 5 I was actively fantasizing violence against myself, tried to convince my spouse he'd be better off not having me around, and incredibly anxious about some stressful issues that haven't changed recently but were just now this week unbearably terrifying. Within 12 hours of taking a pill, no more suicidal thoughts, no more anxiety. No way am I stopping again without actively substituting a new drug and being supervised by a doctor.

          Comment


            #6
            The following study, http://www.ncbi.nlm.nih.gov/pubmed/23990111 received this commentary by a neurologist quoted here:

            "As a result of rebound we have stopped doing long wash-out when we stop natalizumab. All we do now is an MRI and a lumbar puncture to exclude asymptomatic PML, i.e. PML that has started before you develop symptoms.

            If these tests are clear we then start the next drug ASAP, which at present tends to be fingolimod... We usually start it about 3-4 weeks after the last natalizumab infusion. As it takes up to 2 months for fingolimod to start working properly, by the time natalizumab is washed-out of the system fingolimod should be on top of the MS activity.

            Despite this there are still a number of MSers who have been reported, by others, to breakthrough with relapses and MRI activity. This tells me that fingolimod is not as effective as natalizumab at reducing CNS lymphocyte trafficking, which is not necessarily a bad thing as it implies the risk of PML with fingolimod is low.

            The safety data that is emerging with fingolimod supports this statement. I would not treat rebound from natalizumab on fingolimod as a fingolimod failure. The mechanisms of action of fingolimod are complex and may take several months to start working.

            I would therefore wait until 6 months before re-baselining someone and I would compare future MRI scans and clinical activity to this new baseline time point. This issue of rebasing is relevant to most DMTs; the all take weeks to months to start working properly therefore any relapses or MRI activity early on needs to be excluded when assessing a treatment response."

            Hope that helps, Tarbaby. Your neuro seems to largely agree.

            Comment

            Working...
            X