July 12, 2022 at 12:48 pm #18784Ray CottonParticipant
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
July 25, 2022 at 4:11 pm #18801Katie GriffithKeymaster
Hey, Ray! Hmm this is the first I have heard of it. Have you started it yet? Noticed any improvements?
July 27, 2022 at 7:52 am #18808Ray CottonParticipant
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.
July 28, 2022 at 1:53 pm #18816HECTOR VALLEParticipant
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
July 27, 2022 at 6:03 pm #18810Katie GriffithKeymaster
Thank you for your response! That’s definitely encouraging!!
July 28, 2022 at 9:43 am #18814Malcolm LongParticipant
DMF is currently listed on the FARA research pipeline spreadsheet
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.
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