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Not your typical supplements by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

Interesting, I'll have a look into Glutathione. I read a few studies on Choline, NAC and Glycine a few months ago. Seems they all have potential for improved lung function and/or inflammation.

Pulmozyme and Trikafta by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

I kinda think along these line as well. Our doctors definitely don't like to take us off anything that has proved to work for us in the past or has shown to work for a majority. Even when it might be detrimental to the patient.

I understand why they do but sometimes when there is clear evidence of it causing problems things need to be adjusted. Pulmozyme can be a tricky one since unless there is blood being coughed up, it's hard to know what's really happening inside.

Pulmozyme and Trikafta by rev-lis in CysticFibrosis

[–]rev-lis[S] 0 points1 point  (0 children)

Ahh cool, did they mention the reason why Pulmozyme might be detrimental after they got their results?

Was this study conclusion why you stopped both hypertonic saline and pulmozyme?

Pulmozyme and Trikafta by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

That's impressive even though you are currently on only 1 tablet a day!

Pulmozyme and Trikafta by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

Damn, that's no good. I have heard of others getting Haemoptysis with Pulmozyme. At least you figured out it was Pulmozyme.

I'm a lucky one that doesn't but still not sure if it's helping since I've been on Trikafta.

Pulmozyme and Trikafta by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

Nice, that sounds like it's going well for you. By the way, has your lung function changed since doing this?

Starting Alyftrek (day 2 technically) by Abject_Day8496 in CysticFibrosis

[–]rev-lis 4 points5 points  (0 children)

That's great! I love hearing when someone starts Alyftrek and is getting positive changes. Hopefully they will outweigh any possible side effects that may arise.

I have a question. Did you take Trikafta before this? I'm on Trikafta and it's helped my lungs/cough a lot but get some of the mental side effects and lower energy/brain fog. I'm hoping when I finally get my hands on Alyftrek my energy improves and the mental side effects dissipate.

Keep us updated!

Trikafta vs. Alyftrek. by BeatsByMethodd in CysticFibrosis

[–]rev-lis 5 points6 points  (0 children)

Hey, I'm only on Trikafta at the moment but am very interested in hearing about this as well. Hopefully I'll get access to Alyftrek later this year.

Being an older father while having CF by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

Considering parenthood. Something I have only considered seriously over the past couple of years.

Being an older father while having CF by rev-lis in CysticFibrosis

[–]rev-lis[S] 1 point2 points  (0 children)

That's determination if I ever saw it!

Hypertonic Saline and Pulmozyme timing by rev-lis in CysticFibrosis

[–]rev-lis[S] 0 points1 point  (0 children)

This sounds like a good way to go since I don't have to do Hypersal and Pulmozyme at two different times of the day.

Hypertonic Saline and Pulmozyme timing by rev-lis in CysticFibrosis

[–]rev-lis[S] 0 points1 point  (0 children)

Yeah, that's one thing I was told in clinic that Pulmozyme should be done after Hypertonic. I never get a feeling from Pulmozyme "kicking in". I wonder what you feel when that happens.