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What are the best treatments for Fabry disease?
Treatments for Fabry disease: what real patients say works for them, alongside a medically reviewed overview citing sources like NIH GARD and Orphanet.
Beano (Alpha-galactosidase enzyme) or Walmart/Target store brand versions.
Enzyme Replacement Therapy (ERT) is excellent if 1) your insurance covers it, but in my experience 1 session which gave me 2-weeks worth of enzymes was more expensive (for the insurance company) than my wife giving birth 2) you are ok with being stuck with a needle every two weeks (it works like an IV) 3) your schedule allows 4 to 5 hours per treatment every other week. Despite its drawbacks, ERT, in my experience, gets me the closest to a normal life prior to experiencing symptoms for Fabry Disease.
Galafold (migalastat 123mg) is a pill taken every other day. This pill "re-folds" misshapen GALU (think Beano) so it can enter you cells and break down food. This pill is also expensive so be to get a geneticist to verify you need it and fight for you to have it.
Summary:
Option 1: Add enzymes to your meals (Beano)
Compare the amount of Fat vs. Carbs on the nutrition label and take 1 pill immediately before consumption for the lowest number. Also, if the food only contains fat or only contains Carbs you don't need to take any pills. Warning: overconsumption of Beano has given me an upset stomach and diarrhea (I took 2 pills per bit of food).
Option 2: Add two-weeks worth of enzymes via IV - ERT
Option 3: Take a pill every other day (migalastat 123mg)
*FYI you can take Beano and migalastat together using the guidelines above.
Warning: the information provided is anecdotal and has not been evaluated by a doctor. Individual results may vary. Please consult with your physician(s) prior trying any thing mentioned.
Enzyme Replacement Therapy (ERT) is excellent if 1) your insurance covers it, but in my experience 1 session which gave me 2-weeks worth of enzymes was more expensive (for the insurance company) than my wife giving birth 2) you are ok with being stuck with a needle every two weeks (it works like an IV) 3) your schedule allows 4 to 5 hours per treatment every other week. Despite its drawbacks, ERT, in my experience, gets me the closest to a normal life prior to experiencing symptoms for Fabry Disease.
Galafold (migalastat 123mg) is a pill taken every other day. This pill "re-folds" misshapen GALU (think Beano) so it can enter you cells and break down food. This pill is also expensive so be to get a geneticist to verify you need it and fight for you to have it.
Summary:
Option 1: Add enzymes to your meals (Beano)
Compare the amount of Fat vs. Carbs on the nutrition label and take 1 pill immediately before consumption for the lowest number. Also, if the food only contains fat or only contains Carbs you don't need to take any pills. Warning: overconsumption of Beano has given me an upset stomach and diarrhea (I took 2 pills per bit of food).
Option 2: Add two-weeks worth of enzymes via IV - ERT
Option 3: Take a pill every other day (migalastat 123mg)
*FYI you can take Beano and migalastat together using the guidelines above.
Warning: the information provided is anecdotal and has not been evaluated by a doctor. Individual results may vary. Please consult with your physician(s) prior trying any thing mentioned.
Posted Jun 30, 2020 by Fabry Father 1100
