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ibudilast (MN166) clinical trial ?

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    ibudilast (MN166) clinical trial ?

    Is anyone on this board enrolled in this study? This drug is already a therapy for asthma in Japan and Korea and has been for some years. But this trial is to determine its safety and tolerability for use in primary and secondary progressive MS. If there is an MSer on the board that is participating, it would be great to read about your experience, positive or negative. Please post a response.

    #2
    I'm going for it

    I'm in the screening process. I've spoken to the person at the Rocky Mountain ADA Center, I've read the disclaimers, and now we're doing interviews before the actual physical screening.

    I freaked a little when on the paperwork they sent me. It said they wanted me to walk 500 meters. On Clinicaltrials.gov, the criteria was 25 feet. I can do 25 feet, but 500 meters is a distant memory. I talked to my contact and she assured me that 25 feet was the requirement.

    I am semi-excited about this trial. As you know, there isn't much out there for SPMS (me) or PPMS. Also, I've aged out of many trials. I'm not taking anything but meds for spacticity, so if I don't get the drug I'm okay with it.

    Finally, I'm more hopeful, because it's an NIH study and not a drug company. As with many others on this board, I'm a little tainted in my attitude about big pharma.

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      #3
      BJG,
      I think you're on the mark. 500 meters. Is that with or without a walker? I figure if the drug has been in use for 20 years in Japan and Korea, it can't be that bad. And if I get the placebo, I will just keep waiting for the next PPMS treatment. They should start coming fast and furious. Good luck and keep us posted on your progress with the study.

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        #4
        On my 1st visit to my MS doctor, he said that I could possibly be eligible for this trial, or I could try Tecfidera even though it wasn't approved for PPMS. I opted for the Tec, but I always wonder if I should have chosen the MN166 instead. Time will tell, I guess.
        PPMS
        Dx 07/13

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          #5
          J-Bo,
          Do you have any noticable changes in your condition, since you have been taking Tec ? I am just curious. Are you PPMS or RRMS or what ?

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            #6
            I am in the screening process as well. I have PPMS and had to be off my methotrexate for six months before I could start screening. Last week I got the call that I meet the criteria, and in September I will begin screening at Vanderbilt Medical Center in Nashville.

            I have mixed feelings of apprehension, nervousness, excitement and pride about being a part of it.

            I don't want to be one of the patients that get the placebo. I would think I would know if I do end up with a placebo, if the side effects of the real drug are nausea. If I get the placebo and am aware of it, I will feel like it's been such a waste.
            Donna K: dx RRMS 12/07. Rebif 2/08 - 3/09, Tysabri 3/09 - 7/12, ended due to JCV+. Betasaron 8/12 - present
            Filed for SSDI 8/12. Approved 11/12
            dx PPMS 7/13. Added Metotrexate 2.5 mgx3 to Beteseron. Stopped all meds 3/14 to quality for ibudilast clinical trial for PPMS

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              #7
              I have emailed the medical center at Columbia University about the trial. I have spoken to Dr. Riley, by phone, so I hope that is a positive sign that I qualified for the initial screening. I am waiting for an email with a date to go to New York to be screened. I hope that I can get started soon, before my anxiety builds too much. I really don't know what's in store. I know that this drug has been used in Japan and Korea for several years. So I assume that is relatively safe.

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                #8
                I qualify to be in the trial for this drug. I was really excited to do it whichever group I would be in.

                Then I received all of the paperwork on it & now no longer want to do it. I knew there would be blood work but 13 times in 2 years? At least the lumbar puncture is optional. Also, there is no way I can walk 500 meters as it says in the intake packet. It does seem to be a typo but that's the same info I got from 2 different centers (I live between them) although I passed the short timed walk at the neuro's office a couple of weeks ago.

                At first I was just put off a little by the 10 pills a day but now that seems like nothing. They want 250 people in the trial. Do you think they'll be able to get that many?

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                  #9
                  celeste,
                  There are over 20 locations taking part in the trial. I think that means there will be about 10 participants per location. If that is correct, I think the trial will fill up quickly.

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