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    • #18941

      I’d been on Trikafta 3 months, was just starting month 4 at the end of Nov. I got bloodwork done and my liver values were off, with enzymes pretty high. Results got in at the end of a Friday, & I got sent to the ER (a waiting room full of people with flu, covid and respiratory virus!). My liver was painful and swollen – “inlflamed” per the ultrasound. I had been having GI problems already and thought that was why I was feeling pretty lousy. But I was feeling lousy for multiple reasons. It turned out I also had a pretty significant UTI.

      I got taken off the Trikafta immediately, of course. I continued to feel lousy for about another month. Took about two weeks for the UTI antibiotics to knock the UTI down. Dr’s have had me getting a weekly Hepatic Panel – liver enzyme values started coming down each week. It took another month to start feeling gradually better. I do now feel better than I’ve felt in months! My liver enzymes were still a bit high in my last hepatic panel, though. But now under 100, rather than over 300!

      Sadly to me, after only 2 or 2.5 weeks after stopping the Trikafta, I felt the beneficial parts of what Trikafta was doing for me reversing. For me this was in my sinuses, earache came back (it’s intermittent), joint stiffness came back, and dry eyes came back with a vengeance. My gut had already been on a rampage for months and so I have no idea about if Trikafta was helping my gut, or not.

      As for my lungs, on Nov. 2nd I’d had a bronchoscopy which showed that in fact I don’t have any bacteria in my lung airways, but I do have pulmonary sarcoidosis (outside the airways and in my lymph nodes). Next week I will finally get to see a pulmonologist who specializes in sarcoidosis (which is now what is thought to be causing my shortness of breath). Anyway, I felt no change in my lungs regarding the Tritakfta… or at least nothing I could figure out.

      There was talk from a NP in the CF Clinic that if the hepatologist clears me, I might go on a reduced dose of Trikafta. All as yet to be determined.

      Throughout this my already low weight dropped 10 (US) pounds. In the past 3 weeks I have gained back 4 1/2 pounds, which really is helping my energy level. I’ve really been working at it. It is more work than most people understand.

      Tomorrow I have a CF Clinic check in. Then the next day, the hepatologist appointment. Then next week the “sarcoid pulmonologist”. I’ll try to remember to come here and report back.

      Happy 2023 everyone!  -jeanne-

    • #18950
      William Ryan

      Jeanne, I’m so sorry to hear about your issues this past November! I am, however, happy to hear you’re back on the mend. I know from personal experience how hard it is to gain weight (I struggle constantly), but four pounds isn’t anything to slouch at. Keep up the good work!

    • #18955

      Thank you, William! Besides you, only my closest friends help me celebrate with no jokes such as “I’d be glad give you some of my extra weight.”.

      Found out today at my CF Clinic appointment, that I will not be put on Trikafta again. I guess it’s good news in a way – So if my lungs didn’t need the Trikafta – as the bronchoscopy revealed – then it’s not worth the risk of what Trikafta did to my liver for the benefit I got for my sinus issues and other unexpected benefits. But I was hoping that Trikafta would help me gain weight. So now I just have to do that on my own.

      Sprouted brown rice protein powder in smoothies is a new food thing I’m working with. I have “concocted” some pretty tasty 24g protein smoothies.  -jeanne-


    • #18992
      Tim Blowfield

      Have your CF Drs explained why the liver was affected? No it does not suit everyone. But why? We can expect that the liver cells will be affected by changed electrolyte transport. Maybe that caused the bile output to increase into an already congested/partly blocked gall system. Have you gall stones? Many pwCF do.

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