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    Actelion Trial

    Hi, is anyone else on here participating in the Actelion drug trial? I'm coming up on two years in the trial, and I would love to hear from others. I just had my first serious relapse (ever), but pending the results of my next MRI I will probably stay on the drug. The lesions in my brain have decreased in size and activity over the past year and a half. This relapse caused me to lose almost all coordination in my left arm and leg, so my medical team think the activity is in my cervical spine, and I'll be having an MRI of that area soon. I am better now, for the most part.

    Also, please feel free to respond to this if you are in any other drug trial, as I would love to hear the experiences of others in trials, especially some of the lesser known ones like ACT and ONO.
    Portia

    #2
    What is it? I've never heard of it.

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      #3
      Originally posted by BigA View Post
      What is it? I've never heard of it.

      I had to Google a bit. Actelion is the drug co. Ponesimod is the drug.

      http://www1.actelion.com/en/investor...newsId=1535295

      Comment


        #4
        Actelion is the pharmaceutical company/manufacturer. The drug is called ACT-128800. It's an oral med in trials for RRMS (and plaque psoriasis). As Portia said, it's "lesser known."
        http://www1.actelion.com/en/our-comp...newsId=1359631

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          #5
          It supresses the immune system, similar to Gilenya. I think it is more selective of the T-cells than is Gilenya. And yes Redwings, it is called ACT-128800. Maybe it also is called Ponesimod, but my research team has never called it that and it isn't in the informed consent paperwork. Now I'm curious
          Portia

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            #6
            Originally posted by Portia View Post
            It supresses the immune system, similar to Gilenya. I think it is more selective of the T-cells than is Gilenya. And yes Redwings, it is called ACT-128800. Maybe it also is called Ponesimod, but my research team has never called it that and it isn't in the informed consent paperwork. Now I'm curious

            It likely is. Gilenya was Gilenia and before that, fingolimod and before that, it was FTY720. Drugs often have a numerical designation first and acquire various names on their trip through trials to market.

            It's scientific designation and market designation. The numbers and various names mean the same drug.

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              #7
              Fellow trial participant

              I have been on act128800 since nov 2010. One of the last folks to get in.
              I had some issues with right arm and got a out of trial MRI. It indicated some increased activity. Review with neuro and she said new leision would not be cause. My bulged disk probably is. And it is so so minor ( the leision), it was very hard to see. We discussed staying on trial and she stated that if I was on any dmd she would not switch me.
              Act128800 is about to start phase 3 trial. Those on phase 2 will get an extension.

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                #8
                ONO trial

                I've been on the ONO trial for 1 1/2 years. I have had two relapses and we did discuss whether or not I should continue. But the trial is due to be discussed (opened) in the next couple months and then my doctor will be able to review the MRI results without pulling me.

                I am fairly certain that I was on the Placebo the first 6 months due to some minor side effects at the beginning of Phase 2. The tricky part is how do you know that you wouldn't be worse off all DMD's or on another one have definitely wrestled through that and decided to stay where I am for now. I do like the no day to day side effects compared to REbif.
                Anyone else?
                Cherry
                Mom to 5
                Dx July/09

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