• Charles

    Member
    August 15, 2023 at 2:17 pm

    I have never heard of it. Is it being used now for IPF? Chuck

    • John Eames

      Member
      August 15, 2023 at 3:08 pm

      It is in clinical trials and looks very promising because it not only slows the progression but reverses the scarring.

  • Donald Salzberg MD

    Member
    August 15, 2023 at 2:50 pm

    My understanding is that this drug (which has been used in treating sone cancers) is in Phase 1b/2a study. One of the Centers is Tale. If you are on either OFEV or Perfenidone you are NOT eligible for the study. Ive read it May not only allow things down but possibly reverse some of the scarring. Seems exciting.
    Doctor Don

  • Donald Salzberg MD

    Member
    August 15, 2023 at 3:04 pm

    Orphan Drug Status means it’s for a drug that treats <200,000 patients. I’ve asked my Pulmonologist about this.
    Doc Don

    • J L LaBrack

      Member
      August 23, 2023 at 4:05 pm

      I asked by pulmonologist about the possibility of being prescribed Saracatinib as a “guinea pig”, and here is his reply:
      <ul class=”_List messageList”>
      <li class=”_ListElement”>
      <div class=”_Segment _container boundary-none Message fromUs”>
      <div class=”_Segment _container boundary-none MessageContent color1″>
      <div class=”_Text _readOnlyText msgText”>
      <div class=”fmtConv”>
      <div>”What is your opinion on the efficacy of subject drug to treat my IPF? The FDA granted it orphan drug status in 2019. Don’t want to participate in clinical trials because of 50% chance of placebo, but willing to be guinea pig to take it–at this point, I’ve little to lose…”</div>
      <div>Thank you,</div>
      <div></div>
      </div>
      </div>
      </div>
      </div>
      <li class=”_ListElement”>
      <div class=”_Segment _container boundary-none Message fromThem”>
      <div class=”_AssistiveTextWrapper”><span class=”_TextFragment _readOnlyText assistivetext”>Message from (name redacted)</span></div>
      <div class=”_Segment _container boundary-none MessageContent”>
      <div class=”_Text _readOnlyText msgText”>
      <div class=”fmtConv”>”Hi,
      Saracatinib is not currently approved for IPF.  There was some benefit shown on recent preclinical models, but clinical studies are currently ongoing.  Remains to be seen what the results of the studies would be.  The only way to have access to the history of for IPF currently would be to enroll in a trial.
      Thanks,” (name redacted)</div>
      <div></div>
      </div>
      <div>I’d appreciate any comments about the accuracy of that reply and comments from anyone who is currently taking the subject drug to treat IPF.</div>
      </div>
      </div>

  • Theresa Lee

    Member
    August 15, 2023 at 3:26 pm

    Haven’t heard of this

  • John Dominguez

    Member
    August 15, 2023 at 3:27 pm

    The study includes the use of Saracatinib, an investigational drug originally developed to treat certain types of cancers, in the treatment of IPF in a Phase 1b/2a clinical trial.

    Currently recruiting for patients. see ClinicalTrials.gov at https://classic.clinicaltrials.gov/ct2/results?cond=IPF&term=Saracatinib&cntry=US&state=&city=&dist=

  • Millie

    Member
    August 15, 2023 at 3:44 pm

    Sounds too good to be true. If it is eventually approved for IPF, it will probably be too expensive for any of us to afford. Look at the price of the current drugs in use. I take OFEV but qualify to get it free. There is no other way I would be able to afford it.

  • John

    Member
    August 15, 2023 at 4:20 pm

    I participated in a trial at Yale in 2021 for about 6 months. My understanding is that they had very poor participation due to Covid, but resumed the trial this Spring. I alternate appointments with my Yale pulmonologist and a pulmonologist here in Middletown,CT and will be seeing the Yale doc next month. I’ll ask for news about the trial, but I think there is little news until the trial is completed. I hope this will be soon as I have seen the same favorable reports.
    I have been on OFEV since January 2022 without any adverse side effects. I had no side effects during the trial, but don’t know, of course, whether I was taking saracatnib or the placebo.

    • J L LaBrack

      Member
      August 16, 2023 at 11:09 am

      I’m a 80-yr. old IPF patient first diagnosed in 2018.  Never have been on Ofev nor Esbriet because of horrible side effects and very high cost.  Very close to needing supplemental oxygen as SPO2 % rate goes to mid 80s after one flight of stairs.  Recovery to @95% with 2-3 minutes.  Too old for transplant(s) and too far along for a double-blind trial (don’t want to be on the placebo side).  Saracatinib sounds like my salvation and would be willing to take it as a guinea pig (at this point very little to lose).  Is this available through manufacturer through my pulmonologist?  Anxious to hear more!!

      /JL

      • John Eames

        Member
        August 16, 2023 at 12:29 pm

        Have been trying to find out if it is availabe by prescription but don’t think so. It is extremely expensive. $180 for 50mg pill. It is  available in India but need to research that.

    • Kim Jacomo

      Member
      August 16, 2023 at 11:39 am

      John, please let us know if the Yale doc has any updates on the drug.  I’m having a difficult time finding OFEV, but perhaps since Saracatinib is also used for some cancers the cost of the drug wont be as daunting as OFEV and Esbriet.

  • Steve Dragoo

    Member
    August 18, 2023 at 1:27 am

    @everyone

    Astra Zeneca had intended to complete the trial in June  2023 – looking for an update soon…

    • John Eames

      Member
      August 18, 2023 at 3:33 pm

      That sounds great!  Will be looking forward to the results.

    • Millie

      Member
      September 20, 2023 at 7:14 am

      The final phase of the saracatinib study is being done at Mount Sinai in New York. They are currently recruiting enrollees through Dec 31, 2023. The patients will be followed starting in Jan 2024 through June 2024. After this it takes from 4-6 months to clean the data and prepare the primary manuscript. The final results will be available around the end of 2024 or January 2025. The study started in November 2020. I contacted the gal who is heading up the study there and this is the info she gave me.

  • Lennie Naidoo

    Member
    August 18, 2023 at 10:24 am

    Hi Family

    What are the side effects of Saracatinib

    • Chris lynch

      Member
      September 4, 2023 at 1:34 pm

      Probably bankruptcy.

  • Janice Ruth Moore

    Member
    August 22, 2023 at 3:21 pm

    Is this another name or a different drug altogether?
    It is a reason to hope

  • Kevin collier

    Member
    August 22, 2023 at 8:55 pm

    `I also would like to know about any side effects and dosage.

  • Millie

    Member
    August 30, 2023 at 4:19 pm

    I went on the PF website to see what I could find out about sarcatinib. It said that the final trial of this drug will be finished in June of 2024. Some of us on this forum thought it was completed in June 2023. So, that is not accurate. We will have to wait almost another year to find out the results. The cost is $28,000 per year.

    • Chris lynch

      Member
      September 4, 2023 at 10:25 am

      Millie where does the $28k cost

      Info come from? Thanks

      • Millie

        Member
        September 5, 2023 at 4:09 pm

        I believe I found it on their website—-it is made by astra-zenaca.

  • Pete Besio

    Member
    August 31, 2023 at 2:32 pm

    Per clinicaltrial.gov, this is phase 1b/2a:

    Study Record | ClinicalTrials.gov has info on this trial.

    I am currently on my 3rd clinical trial. My understanding of the trial process is it starts at Phase 1, and proceeds to phase 2 then phase 3. The early phases are as much to test safety as they are to test efficacy. I am on my 3rd Phse 3 Clinical Trial, all of them have had a duration of 1 year, which i believe is common for phase 3 trials. I am a curious participant in these trials, and I seek info from those administering the trials. I have had the fortune of working with some very experienced people. My understanding is that once at the end of the dosing phase of a clinical trial, data is analyzed. As you might imagine, this is a very involved process. It is likely to take years after the conclusion of a clinical trial before a drug becomes available. Yes, exceptions exist (COVID vaccine). There has been some movement on accelerating this process for IPF patients, thankfully.

    My guess is it will be quite some time before Saracatanib becomes available to us, and this is true of many of the promising drugs we see posted on these forums. I am not trying to rain on anyone’s parade here, we all could use whatever hope we can find. But in my strategy for dealing with IPF, personally, I need to have realistic expectations.

    • Millie

      Member
      September 15, 2023 at 5:07 pm

      Sarcatinib is already an approved drug for treating certain cancers. Therefore, once approved, I wouldn’t think that it would take too long to be available for use for IPF.

  • John Fraze

    Member
    September 20, 2023 at 8:31 pm

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7416898/#S14title<div>This article discusses the right to try law. Lots of reading but interesting. </div><div>
    </div><div>John</div><div>
    </div>

  • John Fraze

    Member
    September 20, 2023 at 8:40 pm

    If you want to try this drug as a Guinea pig. You can read up on the right to try law passed in 2017 and signed by President Trump.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7416898/#S14title

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