Kalydeco sweat test and sodium chloride

[Mantaray29]

Since my daughter started Kalydeco her sweat test has gone back to normal. However she is still being prescribed some sodium chloride. Is it also anybody's case ? I was wondering if it could be harmful, as she suffers from headaches.

 

[Ratatosk]

Check with your clinic. I would think annual bloodwork would reflect whether she needs it For the most part, if they stay hydrated, the large amount of salt people wcf ingest isn't an issue. But if she's not as salty... she may not need it.

I have noticed that ds doesn't sweat out as much salt as he used to since on Orkambi, now Symdeko, but he still likes certain things with more salt than the average person. I just don't find him taking hits off the salt shaker anymore unless it's really warm outside.

 

[Mantaray29]

Thanks for your answer Ratatosk.

Her annual bloodwork does not reflect any salt loss. She does not sweat much either. But the hospital doctor still prescribes to her 5g of salt every day. She told us that her urinanalysis does not show any excess of sodium chloride and thinks that an excess of salt is less harmful than a deficiency. We live in a temperate region, it is never too hot here.

The problem is that my daughter suffers from terrible headaches. I don't know if they are caused by the kalydeco, a high level of salt or anything else.

 

[Ratatosk]

Did the headaches just start with Kalydeco? Does she have sinus issues? I have heard people say when they started Symdeko they had headaches and increasing their fluid intake helped. DS didn't have issues with headaches -- just very loose stools and some cold/sinus issues when he began Orkambi.

 

[Mantaray29]

She started Kalydeco in 2012 and headaches appeared one year and a half after. Since then they did not disappear. She has no sinus issues and she drinks a lot of water. But she still coughs every morning.
She has been prescribed ibuprofen. It relieves pain but it bothers me that she takes it almost every other day.

 

[Krysm3]

My sweat test was normal from the start...I was diagnosed in my late 20’s and I’ve been on sodium chloride from the beginning. Not for the salt content, but to “moisten” the mucus.

 

[Mantaray29]

Thank you for yout answer Krysm3. How much sodium chloride do you take ?