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    • #19382
      Denny
      Participant

      Both of these studies are recruiting right now, One at the Cleveland Clinic and one at the University of Michigan. I have a pulmonologist at each hospital and will be getting into one of them. Both drugs did very well in original testing and both almost stop signals that cause scarring and minor or no side effects on healthy volunteers. Much better then OFEV and Esbriet! If anyone can get in on one you should do it. I will be doing the GLPG 1690 at U of M

    • #19386
      linda waldschmidt
      Participant

      How can I get in on trying one of these drugs. Thanks Linda

    • #19388

      Hi Denny,

      Wow, thanks so much for sharing this information! Wonderful news, I hope the results of the trials yield promising results for all of us. As Linda mentioned, I anticipate lots of folks wanting to know how they can join the trial – do you mind sharing? Do you have to be a patient at these two centres? If you could let us know when you can, I’d appreciate it. Glad you’re willing to participate and thank you!

      Charlene.

    • #19391
      linda waldschmidt
      Participant

      Denny How do I get in on these trials.  Thanks Linda

      • #19395
        Denny
        Participant

        @lwaldschmidt

        I believe that your doctor/pulmonologist would have to set you up with the coordinator of the study in your area. If you go to GLPG 1690 you can find where and when the studies are taking place. My doctor at Cleveland Clinic told me that if become very ill during the study they sometimes will give you the drug if it is later in the study (if it is assumed that you had the placebo) and if not by doing the study you would qualify and  be given the drug for treatment after the study.

      • #19769
        Denny
        Participant

        So I was called last Thursday to see if I wanted to do the GB00011 clinical trial at Cleveland Clinic and they sent me all of the info (21 pages).  I had my lung test on Friday at U of M and my pulmonologist said they will be calling me in the next month to volunteer for the GLPG 1690 phase 3 study. I did take one month of the WEI herbs (actually on my 4th week now) and my numbers were the best to date being my 5th test. My bad DLCO number went up another 7% and my pulmonologist said that he has never had a patient even close to my other numbers ranging from 125% to 220%!!! Boy, did that make my day!!! Thank you WEI! It really seems like the WEI herbs stopped my progression 2 years ago because each of my 5 PFTs have improved! Now I am not sure if I should do the study if I have no progression but I probably will do it to see if there are side effects and I am sure this disease could kick in at any time. Even though he can’t endorse the WEI herbs being a western doctor he said to keep taking them and playing hockey. One other important thing that I believe is playing into this is that a lot of prayers are being said  for me and I pray a lot. I lit a candle in 7 different historic country churches when I went to Europe a year and a half ago and as fate would have it I am going to Rome in October. And then there is the favors (short of miracles) that Fr. Solanus Casey has been attributed to in Detroit not far from my house. One blessing a month from his church.

    • #19392
      Cynthia
      Participant

      In clinical trials, do half the participants get a placebo?

      • #19393
        Mark Koziol
        Keymaster

        Hello Cynthia, for a research to be valid some participants will receive a placebo. Usually the rules are stated in their publication to recruit participants. Mark

      • #19400
        Denny
        Participant

        Cynthia, If I remember correctly one third get a placebo, one third get the drug and one third get the drug plus extra dosing or stronger dosing.

        • #19787
          Suzanne R Brennan
          Participant

          Denny, I am in the Galapagos trial at National Jewish Health, Denver, CO. I have been taking the meds for about two weeks now. And, you are right: one third take  the full dose, one third take a half dose, and one third takes a placebo. With no real side effects, I don’t know which dose I am getting.

        • #19791
          Cynthia
          Participant

          Did you have to stop taking the drugs you had been taking, such as Esbriet or Ofev?

      • #19793
        Steve Dragoo
        Participant

        @deliassen

        Dennis,

        My comparison between laser and Wei are only subjective because of the timing of various tests and my quick decision to start Wei just before I left for the Philippines because I could not find a class 4 laser here.

        Wei works – it is very hot and humid here and the air quality is not so good. I still have very little cough (serrapeptase killed the mucus though months ago), more energy, much less out of breath, less racing heart and I have not had O2 for almost 4 weeks only because I have not found a satisfactory concentrator yet. So comparing to laser, it is more convenient because I don’t have to travel anywhere.  Dennis, if you can help me understand what you mean by a maintenance dose and how often – that you have mentioned in another thread…

        Hope the clinicals work for you, stage 3 is pretty serious for all of us with IPF or similar… Steve

        • #19811
          Denny
          Participant

          Steve,  I took the WEI herbs for 2 months in August of 2017 and it seemed to STOP any progression any helped my breathing a lot. They suggest to do an occassional 2 week or monthly dose once a year which I do. The herbs seemed to have stopped the progression if there was any because my last 4 function tests have been stable or improved and the one I had last week was my best to date, raising my low DLCO number 7%! I just took my annual dose recently. I know they work! I understand that Dr. Hall is having success with them also.

           

          Suzanne, keep me posted on your study. I am waiting to be called at U of M to start the study. I am actually nervous about doing it because I am feeling great right now and I am wondering if I could trigger something with the disease.

    • #19428
      Jacki Baum
      Participant

      Good Morning, I know they are doing the GLPG 1690 at Northwestern in Chicago and MUSC in Charleston, SC and are looking for volunteers at both sites.  I was contacted by both sites and asked to join the study.  I can assume there are others around the country.  There are side effects with this drug, cough and headaches are the most common according to my Doctors.  Hope this helps.

      Jacki

      • #19442
        Denny
        Participant

        Jacki,  how do you know about the side effects? Is that with GLPG 1690?  I have a choice to do one or the other if I qualify and I believe that the BG00011 is a shorter trial. If you all received the newsletter today another interesting drug appears to be quite promising.

      • #19828
        Steve Dragoo
        Participant

        @deliassen

        Hi Denny –  that is just terrific and good for you. But that begs the question why are you interested in clinical trials? PM me if you want to…

        Thanks – Steve

    • #19446
      Jacki Baum
      Participant

      Hey Denny, I was going through the pre-testing for the trial and the release paperwork they sent me stated the side effects of headache and cough, so I asked my Dr and he confirmed what I had read.  Now having said that,  all my Drs in Charleston are very big on this study.

       

    • #19462
      Jay Turbes-s
      Participant

      ClinicalTrials.gov lists the GLPG 1690 trials in two specific locations:

      https://clinicaltrials.gov/ct2/results?cond=&term=GLPG+1690&cntry=&state=&city=&dist=

      — there are others, but not related specifically to IPF treatment.

    • #19463
      Jay Turbes-s
      Participant

      There is one recruiting trial on Clinical Trials.gov for BG00011:

      https://clinicaltrials.gov/ct2/results?cond=&term=BG00011&cntry=&state=&city=&dist=

      Note that application can be made through any of the Clinical Trials.gov listings, or at least there’s info. on how one proceeds with the application.

      • #19817
        Jay Turbes-s
        Participant

        …and after attempting to apply to participate in the GLPG 1690 trial here at National Jewish and being informed that we would need a referral from our regular pulmonologist at Kaiser/CO, who has refused to give it. She cited her opinion that Kaiser’s original diagnosis of IPF was a misdiagnosis and so Milady is not a candidate — this in spite of a previous diagnosis by National Jewish that Milady indeed has IPF.

        Builds confidence in one’s caregiver, eh? This is the first time for us that a trial required a doctor’s referral; we were in a previous trial at National Jewish where IPF was verified. No such approval was required.

        I can’t help but conclude that if you’re victim of an HMO like Kaiser/CO, God help you…

        • #19825

          Jay, that is absolutely awful – I am so sorry to hear this is your experience!

          She won’t give a referral for the study because she doesn’t think it is IPF? Can you use the previous diagnosis at National Jewish that cites her diagnosis, and use this as leverage to ask for a referral? That is such an unfair situation for you both to be in! I would escalate this and seek additional opinions.

          Goodluck!
          Charlene.

    • #19771
      Denny
      Participant

      I forgot to mention that the BG00011 testing is a weekly self administered shot and a monthly shot at the Clinic (2 hours one way drive), plus CT scans, PFTs, blood tests, etc. I would much rather do a phase 3 pills instead of phase 2b shots…

      • #19836
        Jay Turbes-s
        Participant

        Hi, Charlene,
        We’ve contacted National Jewish directly and found that a referral from our Kaiser doctor is not required. That was what I assumed from the clinicaltrials.gov info.

        It was interesting to hear what they had to say about Kaiser/CO — we apparently aren’t the first Kaiser defectors, and their feedback ‘twarn’t pretty!

        But there’s more than one way to defoliate a feline, I guess 🙂 !

        All the best to you, too!

        J. in CO

    • #19841

      Hi Jay,

      Thanks for getting back to me and letting me know that you’ve been able to navigate the barrier that Kaiser forced upon you. I’m so glad you were able to do that and hopefully are able to qualify for the study. Do keep us posted — kudos to you both for working through that challenge!

      Take care,
      Charlene.

    • #21471
      Cindy Sears
      Participant

      Hi Denny,

      Just wanted to let you know I am starting the screening at U of M for 1690 trial.  They set up 2 appointments for screening then a 3rd appointment to start the medication.  Have you started the medication yet?  If you have how is it going? Any issues I should know about?

      Thanks,

      Cindy Sears

    • #21481
      Ken Monroe
      Participant

      Biogen BG00011 was stopped due to safety concerns.

      • This reply was modified 11 months, 3 weeks ago by Charlene Marshall. Reason: formatting
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