Cystic Fibrosis News Today Forums Forums Treating CF CFTR Modulators Health Canada Grants Authorization for Trikafta

  • tim-blowfield

    June 21, 2021 at 7:52 pm

    Whoopee! That is great.

    Re: side-effects after starting these Corrector/potentiator drugs: many have been reported and some have reported that they decline as time goes by. This is almost certain as the body adjusts to being ‘normal’. The headaches and many other symptoms seem similar to what Vets see when sheep are provided with fresh water after a long period on salty water. Sheep can tolerate quite salty water but act as if drunk and show other neurological signs if they change rapidly onto fresh water. Similarly we may expect that a CF person who has lived with abnormal intracellular electrolytes (i/c e’s) all their lives to experience symptoms when those i/c e’s drop as a result of the improved Chloride channel function.

    Maybe if symptoms are too severe on starting with Trikafta and need to be stopped then restarting at a low dose and working up may be a reasonable choice. (may replace the nasty side effects with milder symptoms though they may last longer if each increase in dose causes a return of the side effects – but who knows! Only time will tell.


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