Viewing 3 reply threads
  • Author
    Posts
    • #18784
      Ray Cotton
      Participant

      I am starting this drug on a trial basis for my late-onset FA.  The drug has many warnings and is expensive; off-label usage (non-MS) is between $200-$2700 out of pocket, depending on whom you get the prescription.

      Has anyone tried this for FA?  What were your results, complications, and concerns?  Thanks

       

    • #18801
      Katie Griffith
      Keymaster

      Hey, Ray! Hmm this is the first I have heard of it. Have you started it yet? Noticed any improvements?

      • #18808
        Ray Cotton
        Participant

        Hi, Katie,

        I found this study in the NIH (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6546270/), a source that I consider credible and well facilitated.

        Although usage is off-label (not for MS), which means you pay full retail price, my experience over three weeks has been positive.  The side effects have been unusual, face and torso rash for an hour that feels like sunburn and intermittent stomach pain, lasting about an hour a day.  I also had to take a comprehensive blood test due to the strain the medication can place on your liver and white-blood-cell count.

        I followed the studies’ recommendations, which were also supplemented with Resveratrol, and I have seen better coordination and speech patterns in a short time.  The study clearly shows an increase in FRX levels.

        The study, I think, speaks for itself.  Great results, and I concur.  A few folks have direct messaged me, and I am happy to answer questions directly or on this platform.

        Best,

        Ray

         

      • #18816
        HECTOR VALLE
        Participant

        Dear Friends,
        My first symptoms started  in 2000, when I was 36 years old, and were looking for different doctors, because nobody knew what was happening, I was walking like I was drunk.

        Then, in 2004, when I was 40, I went to Boston, because my neurologist was doing a full year on movement disorders and his professor, Dr. Brown studied me for a week and finally I came back to Mexico with nothing apparently, but In February 2005 received a letter from Dr. Brown with my diagnosis from AthenaDiagnosis, showing  891 and 236 repetitions showing my FRDA, or Friedreich Ataxia.

        Since then, 18  years ago, I started deteriorating, but working very hard, both in my job and rehabilitation, i went through a 3 wheel waker, then a four wheel waker, then a scooter and today I am 58 and still come to my private office, but I have a chauffer to help me. I depend on my scooters and wheelchair, so you may understand I am desperate for medicine. I want to start as soon as possible, and will let you know how am I doing. I got the DMF, and will start whith the cocktail  (DMF + RESVERATOL) on Augsy 1

        • #18817
          HECTOR VALLE
          Participant

          HECTOR VALLE

          MEXICAN, BUT SPANISH BLOOD

          58 YEARS OLD

    • #18810
      Katie Griffith
      Keymaster

      Thank you for your response! That’s definitely encouraging!!

    • #18814
      Malcolm Long
      Participant

      Hi Ray,

      DMF is currently listed on the FARA research pipeline spreadsheet

      https://curefa.org/pipeline?utm_source=FA&utm_campaign=6a109b620c-RSS_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ae7feab64b-6a109b620c-71573145

      as under test, along with other items.

      Great to hear it has had a positive result for others but IMO frustrating that testing known drugs is so protracted vs the quick use of known drugs for COVID.

Viewing 3 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account

Verify you are not a robot