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    ACTH Trial

    I have been asked if I wanted to join this ACTH Trial. It's a trial for secondary, and progressive forms of ms.


    Has anyone else heard of this or signed up for this?

    #2
    I hadn't heard of it, 90stangg, but after reading your post, I just now found this: https://clinicaltrials.gov/ct2/show/NCT01950234

    It seems like from the dates mentioned, it should have started last year, but maybe they delayed it, or maybe this is another phase.

    At any rate, please let us know if how it goes! Do you know if they are still accepting trial subjects for it?
    PPMS
    Dx 07/13

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      #3
      [QUOTE=J-Bo;1472277]I hadn't heard of it, 90stangg, but after reading your post, I just now found this: https://clinicaltrials.gov/ct2/show/NCT01950234

      It seems like from the dates mentioned, it should have started last year, but maybe they delayed it, or maybe this is another phase.

      At any rate, please let us know if how it goes! Do you know if they are still accepting trial subjects for it?[/QUOTE

      Hi J-Bo
      It did start last year. My nero last July talked about it, and asked if I was interested. Told him yes and never heard from any body. When I saw my nero in Jan. made comment that I didn't hear anything. Did what he told me to do if I didn't hear anything, and called his office after two weeks. Talked to his nurse and still didn't hear anything. Told me he would check on it and I would hear something either yes or no.

      I was called on Feb. 6 told I would need a bone scan and a A1C test done, and they would get back to me after it was done. bone scan done on the 12th, A1C on the 10th. Now I wait for the results.

      As for your question are they still taking trial subjects, I would have to say I think so. I don't think they would have called me otherwise. You would have to call to verify.

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        #4
        Well, if I had read the page more carefully that I linked to, I would have seen for myself that they are indeed still recruiting. And after reading through eligibility and exclusion criteria, it looks like there's nothing that would rule me out as a participant.

        They gave a contact email, so I sent an inquiry. The one possible deal-breaker is that it's in Minnesota (I know, your neck of the woods, so that works for you) but I'm in Pittsburgh PA, and it requires three consecutive days a month for 36 months. Unless they also do this through some other locations (I think I've seen trials where they do that), it's not going to be realistic for me to travel that far that often. I guess we'll see what they say. Even if it were every other month, I might be able to work something out, but it can't work otherwise.

        I;ll let you know what I hear, and please update us if you have something to say!
        PPMS
        Dx 07/13

        Comment


          #5
          Originally posted by J-Bo View Post
          Well, if I had read the page more carefully that I linked to, I would have seen for myself that they are indeed still recruiting. And after reading through eligibility and exclusion criteria, it looks like there's nothing that would rule me out as a participant.

          They gave a contact email, so I sent an inquiry. The one possible deal-breaker is that it's in Minnesota (I know, your neck of the woods, so that works for you) but I'm in Pittsburgh PA, and it requires three consecutive days a month for 36 months. Unless they also do this through some other locations (I think I've seen trials where they do that), it's not going to be realistic for me to travel that far that often. I guess we'll see what they say. Even if it were every other month, I might be able to work something out, but it can't work otherwise.

          I;ll let you know what I hear, and please update us if you have something to say!
          Hi J-Bo,

          The three days a month are when you take your shots. This can be done at home. They have a nurse call to remind you it time to take your shot. I did talk to the nurse coordinator and mentioned how you might be interested, she told me I could give you her direct number if you want. Let me know.

          The results of my bone scan and A1C have been accepted. I go in for my screening visit Friday the 27th. This can take up words of 4 hours. If everything goes okay I will go in for the base line visit on the 13th of March.

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            #6
            Hey thanks, 90stangg! Actually, there is a phone number listed on the clinicaltrials.gov page. I will give her a ring on Monday.

            And if I could do my own injections, that could work. I've never done that before, but I'm not needle-phobic so I don't think that would be an obstacle. I'll let you know what I find out.

            A1C...is that the one where they make you drink that super-sweet drink and you have to stay there for hours?
            PPMS
            Dx 07/13

            Comment


              #7
              Originally posted by J-Bo View Post
              Hey thanks, 90stangg! Actually, there is a phone number listed on the clinicaltrials.gov page. I will give her a ring on Monday.

              And if I could do my own injections, that could work. I've never done that before, but I'm not needle-phobic so I don't think that would be an obstacle. I'll let you know what I find out.

              A1C...is that the one where they make you drink that super-sweet drink and you have to stay there for hours?

              Looking at the clinicaltrials.gov page, the contact person Susan is the same person I'm dealing with

              The A1C test is a blood draw where you have to fast before hand.

              The injection is subqub basically a diabetic needle, a 1/2 inch needle

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                #8
                I started the trial today. we will keep you updated

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                  #9
                  Good luck and thanks for the update, 90stangg!

                  I did wind up calling & emailing that contact person, and she initially called me, but then no follow-up. I'm not sure what's going on at that end. I applied for the Ibudilast trial at Cleveland Clinic, and still waiting to hear from them, too.

                  I heard a depressing story on NPR last week about trials registered with clinicaltrails.gov. It said that a very large number of them never post results, which is the impression that I got reading through them. Often, they won't even tell the participants what happened. I hope that gets changed very soon! It seems so wrong that they get to use us as Guinea pigs, and never even have the decency to keep us informed.
                  PPMS
                  Dx 07/13

                  Comment


                    #10
                    I completed my 3 years on the ATCH trial. Have no idea if I was receiving the real stuff or not. I did feel a little bit better for a few days after the injections, but who knows. Was told I won't find out for at least 4 years as they are still taking applicants and it being a three year trial. Haft to wait until trial is over before they will let you know.

                    Gary

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