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    • #17206
      David Crellin
      Participant

      My son found out today he carries multiple repeats of the GG:CCCC repeat, so he has inherited my inherited proclivity to develop fALS (& fFTD). He’s 28 so I hope he benefits from genetic therapy research.

      I’m taking Metformin. I wonder if this might work on a low dosage as a preventative/prophylcatic to stop him developing disease. Has any research been done on this? If not, I may start a family research project.

    • #17345
      Watti
      Participant

      Hi David, I see your sn has the genetic repeat – but hopefully has not been diagnosed/ doesn’t ha e als (MND).

      I don’t have als but my dearest friend does. I too was wondering about metformin as a treatment or preventative. Its such an interesting drug. I doubt many will contact you about it as most don’t know much about the treatment side of things. Let me know if you find out any interesting stuff. Cheers…Meg

      Melbourne, Aust

       

    • #17347
      Dagmar Munn
      Keymaster

      Metformin is a medication used to treat Type 2 Diabetes, and if misused, has serious side-effects. More here:

      https://medlineplus.gov/druginfo/meds/a696005.html

      It has not been used in the treatment of ALS/MND or as a “preventative” (nothing has been found to “prevent” ALS). It would be highly recommended to consult a physician rather than self-medicate.

    • #18028
      Kiki
      Participant

      <b>Hi, I read about the supplement berberin which has similar effects as metformin. Also vitamin E, D and B might </b><span style=”font-size: 16px;”><b>delay</b></span><b> onset. Although I would always talk to my PGC before taking any supplements due to the mentioned side effects/ overuse. </b>

      <b>Regards  </b>

    • #18041
      Anonymous
      Inactive

      I have diabetes type II. Originally my PCP had me on Glipizide to control blood sugar, but once she found out that I am pALS, she started me on Metformin. She is not so dumb as I think she is sometimes maybe…:-) ( Metformin | ALS Therapy Development Institute)

      Diabetes may have a link to ALS (New clues to the link between ALS and type 2 diabetes (medicalxpress.com) )

    • #18097
      David Crellin
      Participant

      Metformin is in clinical trials in Florida specifically to test whether it suppresses toxic proteins in c9orf72 ALS. https://clinicaltrials.gov/ct2/show/NCT04220021

      It was noticed that there is a much lower incidence of ALS in diabetics, hence research into diabetes medication for ALS.

      After emailing some research papers to my GP, he prescribed it for me. Prior to that one of my medical consultant friends sent me a supply from Singapore.  I told my ALS consultant I was taking it and he replied that he would do the same in my shoes. So I’m covered by three medics! And my sister and  brother-in-law are both medics too. So that makes five.

      I check blood sugar every week.

      And the results? I had my four-monthly appointment with my MND centre team on Monday. Forced vital capacity (cough, sniff, exhaled pressure, etc) had all stayed the same or improved. I registered off the scale on the ’empty your lungs’ test. All other FRS measures had stayed unchanged too.

      Hey, ALS is inexorable in its progress, but my Mum died within 5 months of diagnosis.

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