Although I had been offered Riluzole/Rilutek at an earlier date, I was not convinced to start taking it since I had no definitive diagnosis of ALS. In addition, although this medication is purported to add an additional 3 months life expectancy to some pALS, many report no benefit and significant side effects, particularly elevated liver enzymes. The latter is something that has been an ongoing issue for me for many years.
However, since being diagnosed with PMA a few days ago, I decided that I would start taking it and closely monitor my liver stats.
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Started: Feb 22, 2018
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Dosage: 50 mg Twice daily
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Effectiveness: Can’t tell (for progressive muscular atrophy)
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Side effects: None
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Adherence: Always
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Burden: A little hard to take
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Cost< $25 monthly
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Advice & Tips: Best to set a timer since it is supposed to be 1 hour before or two hours after a meal.
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