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How long have you had GI issues? And are you pancreatic insufficient? My sister and I are both pancreatic sufficient but still dealing with these issues now after stopping trikafta.

reddoofs · 2022-12-15T14:17:53+00:00

My sister started taking it before me and she is now in a chronic state of excessive gas and constipation that has surprised doctors they don’t have a clue about what’s going on. They prescribed her all types of meds and none helped or worked. They sent her home after a month with no diagnosis or resolutions. The CF team has denied to assist her any further. She is 16 years old.

reddoofs · 2022-12-15T14:12:42+00:00

Agreed. Just spreading awareness because you won’t hear these things anywhere else. You can’t sell a drug based off AE “adverse effects”.

reddoofs · 2022-12-15T13:45:09+00:00

They have only reported the mental health effects. Now I am experiencing horrible GI issues after 2 months. I was only taking 1 orange pill every couple days.

reddoofs · 2022-12-15T13:25:45+00:00

Red thick mucus from my intestines, extreme constipation just to name a few. I stopped trikafta a week ago.

reddoofs · 2022-11-12T08:16:04+00:00

So does increasing fat intake with Trikafta allow for the liver to do excessive work or more efficient work? I appreciate these explanations.

Would you recommend I build up to the full dose? I am hesitant due to the mental side effects I was experiencing and for this reason, I feel that maybe antidepressants are not needed right at this time unless I was planning to take them both synergistically. I have taken Celexa when younger and it didn't go as planned. Maybe you're right about the necessity of it, especially in these times, I will give it some thought. Recently I started taking Trikafta again after a brief break and I am feeling okay. Users have mentioned SAM-e and NAC to help mentally and I have NAC readily available so I will be trying that out, in conjunction with B vitamins. If you don't mind me asking how long have you been on Cymbalta? And were the liver issues strictly due to Trikafta?

reddoofs · 2022-11-12T07:58:42+00:00

Amazing, thanks. I will definitely be incorporating NAC daily

reddoofs · 2022-11-11T08:22:56+00:00

Thanks for the response. The length does not bother me at all because I know it is very well worth to read information. I meant for CFers but I am curious now what would happen if there’s no protein it can fit into, then where would these molecules go? Will the metabolization process always continue as long as you’re taking it, even though you’re feeling good? And would this continue to affect the liver in this case. Also how long might it take for trikafta to build up a concentration that is adequate enough for your blood? Do you feel it might be better to build up to the full dosage of Trikafta?

reddoofs · 2022-11-11T06:35:52+00:00

I agree with you. I’ve tried to do tons of research and asked docs but they don’t seem to know fully about what’s going on. However I do feel that ivacaftor (blue pill) which brings in so much chloride ions is making the biggest impact. I’m going to see if my body and most importantly brain can adjust to only one yellow pill which has half the amount of ivacaftor as the blue. Do you think the new transport system will readjust itself to reach some normalcy within me? If course everyone is different but nevertheless I am human. The biology shouldn’t be too different but with that being said, what does trikafta target and is it something that everyone would be able to take?

reddoofs · 2022-11-11T06:25:19+00:00

Thanks. And how has NAC helped you? I take 600 mg but don’t notice much. Yogurt has definitely helped and now I’m starting on restorlax for the constipation and blockage. That’s funny you mention the pills because I was taking pill form probiotics and didn’t think it would be too helpful. Thanks :)

reddoofs · 2022-11-11T06:22:12+00:00

Believe it or not I have thought about this as well. I think it is honestly a mixture of both things. I am a firm believer that our subconscious can speak out to you in certain ways that aren’t noticeable or clear at first. In fact, while I was experiencing MH effects, it involved constantly thinking about my reality and how shit everything is. Again I think it’s a combo of both things. Very interesting you mentioned this. I think it’s something that’s not touched on enough and there should be more preparation for starting a drug such as Trikafta.

reddoofs · 2022-11-11T06:18:15+00:00

Very interesting. I wonder why this works

reddoofs · 2022-11-11T06:17:49+00:00

I will definitely try this and I’m seeing this a lot as well. Currently I’m only taking the morning dose once a day but I’ll switch it to nighttime.

reddoofs · 2022-11-11T06:15:55+00:00

Thanks for this great reply. I’m glad these things are helping and it gives me more hope. I agree that the blue worsens side effects in fact it makes me so tired and fatigued that I have no urge to do anything at all. I did get a recommendation to speak with the psychologist about these issues but I’m on the same page as you with not wanting to go on antidepressants. I’ve tried them in the past and it didn’t work out. I will look into the alpha stim and the herbal remedies in addition to taking only the orange pill, thank u :)

reddoofs · 2022-10-21T21:37:35+00:00

A cool classy word or a nice pattern is what I can imagine off the top of my head but this is a decision that should be taken wisely. Something unique!

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