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Sweat test before starting Symdeko?

kenna2

Member
I just got approval though my insurance for Symdeko and will be switching over from Orkambi. Did anyone who has started on Symdeko have a sweat test done before they started on it? My clinic keeps talking about it before they start me on it and I can't seem to get a straight answer from anyone as to why. They keeps saying so I can be registered for it. Wondering if this is just a my clinic thing or happening elsewhere?
 

stephen

Super Moderator
I switched to Symdeko from Kalydeco about four weeks ago. No sweat test. Just culture and Full PFT.

Good luck. It significantly improved my breathing.
 

SarahProcter

New member
I just got approval though my insurance for Symdeko and will be switching over from Orkambi. Did anyone who has started on Symdeko have a sweat test done before they started on it? My clinic keeps talking about it before they start me on it and I can't seem to get a straight answer from anyone as to why. They keeps saying so I can be registered for it. Wondering if this is just a my clinic thing or happening elsewhere?

I would assume that it is to check how well it works for you. Before my daughter started Kalydeco her sweat test #s were in the "definitely CF" range, and after taking Kalydeco, went down into the "normal" range. I assume that even though you're not going from zero drugs -> Symdeko, it's the same idea - you can't compare your post-Symdeko sweat test value with your pre-Symdeko sweat test value unless you take that baseline measurement first.
 
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