Viewing 13 reply threads
  • Author
    Posts
    • #15688
      Gary Levin
      Participant

      My 32 year old son started the drug and his PFT went from 70% to over 90% in less than one week. He stopped coughing and also improved his activity level considerably. He is also a CF diabetes patient and was started on insulin. He gained 20 pounds over two months. He had some debilitating side effects, insomnia, involuntary leg jerking. He stopped the drug for a week and the symptoms ceased. Eventually his doses were altered. We still have much to learn about dosing. The drug is promising…

    • #15690
      Jenny Livingston
      Keymaster

      Gary, as time goes on, I’m hearing of more and more side effects from Trikafta. For women in general, it seems to be having an affect on hormone functioning. I imagine this might be true for the male population as well, but I haven’t heard seen or heard men speaking about it. I suffered from insomnia tremendously for about 5 months. Thankfully, that’s subsided. I’ve heard of neurological side effects and also concerning changes in mental health. These meds are so new, it’s impossible to know how they’ll affect us long-term. As you said, we have so much to learn! I’m glad to know that research is ongoing and that there are efforts to make these medications even better, as well as advancing treatment outside modulator therapies.

      Thanks so much for sharing this!

    • #15691
      Tim Blowfield
      Participant

      No surprises that Trikafta is causing side effects. CF’ers have often lived for years with not just abnormal mucous clogging up the lungs but abnormal electrolyte levels within every cell of their bodies. If Chloride (an anion) is not being pumped out then it may be expected to be high within the cells. Cations (Potassium and Calcium) will also be high to balance the high anion. When Trikafta opens the Chloride channel, intracellular Chloride will drop and so will the Cations. This happens in every cell in the body and seems the most probable cause of the side effects. A drop in intracellular Calcium can have profound effects (muscle weakness being just one. Similarly a drop in intracellular Potassium may cause a ray of symptoms. Hopefully the body gradually readjusts to ‘normal’ intracellular electrolyte levels – most seem to do so.
      Best of British luck to all.

    • #15710
      Christina Kolassa
      Participant

      Has anyone had a blood draw showing a high CK Level? My son, Will, who has been on Trikafta since Oct 2018 recently was hospitalized for very high CK level in his blood. Just prior to the blood draw he lifted weights with a friend. The docs were concerned that the drug may have caused the elevated levels. While in the hospital they monitored his heart and gave him IV fluids. He only stayed 2 nights because his levels began to decline. I believe he had the elevated levels because of a condition called Rhabdomyolysis. “Nontraumatic causes of rhabdomyolysis include extreme muscle strain, especially in someone who is an untrained athlete; this can happen in elite athletes, too, and it can be more dangerous if there is more muscle mass to break down.” It’s my un-medically trained motherly instinct that believes this is what happened. I would love to know if anyone else, that has high CK levels, exercised more vigorously before a blood draw. I know lots of people are feeling a ton better after being on Trikafta and I wonder if because you feel better you’re able to exercise more and that’s causing the CK levels to become elevated. (Within 10 days after the initial blood draw Will’s CK levels were in the normal range, which is exactly what you’d expect if you suffered a bout of Rhabdomyolysis.)

    • #16409
      Tim Blowfield
      Participant

      So much that is unknown about this drug and CF. Rhabdomyolysis may well be due to the person on Trikafta being able to exercise more and to suddenly and too rapidly increase muscle activity. It would suggest there is a marked change in muscle cells. What were the results on electrolytes? (I do believe – as said before- that intracellular electrolytes are abnormal in all cells in the body of a CF person. Normalisation of these intracellular electrolytes is the probable cause of many of the side effects of Trikafta especially as so often the side effects abate after time. I am not surprised to hear even of neurological and psychological issues of persons on Trikafta as the brain is affected by abnormal levels of salt and other electrolytes.
      We need more research on this neglected side of CF.

      • #16412
        Jenny Livingston
        Keymaster

        Tim, as time goes on, I’m learning of more and more people struggling with neurological and psychological side effects. I agree that this is something that needs more attention and research! We still have so much to learn about CF and in particular, these new drugs.

    • #16419
      Tim Blowfield
      Participant

      Yes. This needs to be watched very carefully. I do hope that it is just part of the adjustment process and that most will adjust. Restarting at a lower dose is always a reasonable thing to do – gradually working up. But a lower dose may be all some need.
      My wife was recently started on the new Heart Failure drug at 1/2 the smallest sized tablet – gave horrible side effects, Tried 1/4 (1/64th of a normal Adult dose) still horrible side effects. Stopped it and the side effects gradually resolved over a week. Retried it again at 1/4 tablet – side effects returned.
      CF persons are notorious for side effects to drugs that ‘normal’ people usually tolerate well.
      I suspect it is all to do with the intracellular electrolytes!
      We need more research and to document such.

    • #18239
      Leslie Sternlieb
      Participant

      This is my first post. I have been experiencing salivary issues for the past eight months and wonder if it’s Trikafta or CF related. I began taking Trikafta in December 2019 and am one of the fortunate ones whose lung and GI functions have greatly improved, with seemingly no side effects. Then, in August 2020, my ability to taste food changed—I started to have a metallic taste that was most apparent with bland foods like bread, rice, and scrambled eggs. (To my knowledge I never had COVID.) It began a couple of days after taking oral Neomycin and Xithraxin for possible SIBO. The doctors ruled out those antibiotics as a cause for metallic taste. I took a blood test for Sjogren’s (negative) as well as bloodwork that ruled out heavy metals. I had my first sinus surgery in December 2021, and after a few days I developed tingling and numbness in my left lower leg and foot, and left hand. The tingling sometimes affected spots around my body and head, but after a while settled mostly around my left lower leg and hand. It comes and goes, but worsen when I take a warm bath. I was evaluated by a neurologist in March 2022, who attributed it to my (temporary) rise in blood sugar after a few days on Prednisone after my sinus surgery, and days any nerve damage should heal after a smile. (My A1C has never risen above 6.8 and is now 6.5; diabetic neuropathy was ruled out by my podiatrist.) I visited an oral pathologist who said my saliva was “ropey,” and it may have been possible that I was producing more mucus than serous saliva, which could affect my taste. Is more mucus (vs serous) saliva a CF thing?  I also had an upper endoscopy and BRAVO to check out acid reflux. I have some evidence of that, but it’s mild. Acid reducers don’t seem to help with the metallic taste, either. I’ve seen several specialists and had several diagnostic procedures. Anyone else here reporting a change in taste? Ropey saliva? I think the tingling might be a rare Trikafta side-effect, from what I read in this thread. (Though my tingling didn’t begin until two years after beginning Trikafta.) All of this is new, and I’m at wit’s end. Any help is greatly appreciated.

      • #18240
        Tim Blowfield
        Participant

        I would not rule out COVID as the cause of taste problems but the tingling is oft seen with TK. Could it be that COVID has a part to play there too. Could it be causing the increase in these symptoms in pwCf taking TK? Subclinical and very mild cases of COVID are quite common. If COVID,  taste should improve after a couple of months.

        • #18242
          Tim Blowfield
          Participant

          Talk it over with your CF Physician & clinic staff. They may not know the answers and may try by modifying the dose for a while. Or adding something else. Tingling, etc, does seem to be a CF thing – Reva had ‘Restless Leg Syndrome’ for years before CF was diagnosed – seems to occur in milder forms of CF – prednisolone seems to have helped her. Dry mouth, saliva changes and dry eyes are well known in CF – Sjogrens may exacerbate it and in CF is probably a response to chronic antigenic stimulation of infections in CF.

           

        • #18245
          Leslie Sternlieb
          Participant

          I’ve been experiencing this change in taste since August 2021, so even if I did have a mild case of COVID (unlikely, as I barely leave my house except for the occasional medical or dental appointments), it should have cleared by now, in April 2022. In fact, it’s changed somewhat, though still metallic. Only strong or spicy foods escape that taste. Sometimes I develop canker-like sores along my lower lip, esp where the lip meets the gum in the middle. But there is a pronounced feeling of bumps in the lower lip, which slightly alters but has been present for a year. Began Trikafta on Dec 2019. The tingling actually began with prednisone therapy a few days after sinus surgery last December, and now comes and goes. Seems a bit late for Trikafta to be at fault for all my symptoms. My CF doc doesn’t know what to make it any of it. Nor does the oral pathologist.

        • #18529
          Chuck
          Participant

          I had covid just recently and had a metallic awful taste, no matter how much I brushed my teeth the taste would not go away, had it for about 5 days til it started to fade away.

      • #18243
        Paul met Debbie
        Participant

        Hi Leslie,

        Great to have you on the forum and good questions, many of which Tim already thought about.

        CF to my knowledge is not about more mucus per se. It is about more thick, viscous mucous. It could be called ropey indeed. Saliva is mucus as well. Mucus is a mixture of water and proteins. With cf, there is less water because of too little chloride ions and this makes the mucus thicker. After taking trikafta, the mucus becomes more watery and so you might experience this as “more” mucus/saliva, and this might also increase the experience of ropey-ness that before was not noticeable so much. Still trikafta only moderates cf, doesn’t completely cure it, and the mucus is still thicker/ropier than in people without cf. This is no problem, only a phenomenon to get used to.

        Like Tim, my first reaction to you mentioning not having had covid was “you don’t know that, might have had covid anyway”. So time might cure your taste problem. I don’t know of medication that changes taste for good, even after stopping it, so it might return to normal after all. Hope so for you, taste is a very important sensation.

        Trikafta might have something to do with taste as well. I experienced a very slight and subtle change in taste since trikafta. Not pronounced enough to pinpoint it to a specific taste of something (like metal as you report), but still. It is especially clear at night, that I notice my saliva tastes differently to me. I attribute this to more watery saliva. The increased flow makes it possible to notice the taste of saliva for the first time in my life. So I think it is more a question of “new” taste than of “different taste”. I got used to it by now, after 8 months of use.

        Some foods indeed can induce a metallic taste in the mouth. You mention scrambled eggs, funny because I always have had a metallic sensation with scrambled eggs indeed. If you look for it on google, you will find the explanation. You are indeed tasting iron from the yolk and sulfur (hydrogen sulfide) from the white which combine to ferrous sulfide. Tomato sauce increases the experience because of the acid in the sauce. Experiment with lower temperatures (slow cooking) and different material cooking pans (with or without teflon coating) can change the taste of metal a bit. Other foods might have a metallic taste as well, it is a well known phenomenon that often has a clearly explainable chemical origin, like with the eggs. If you google food and metallic taste you will find many examples.

        It might be that your taste increased after trikafta which made you more aware of tastes that before you couldn’t notice. Other food may even taste better or more intense after trikafta. For me, this is how it worked to some extend. It is subtle, but definitely noticeable. You might need to develop and fine tune your taste experience all over again, finding different foods attractive or not attractive than before. It might even be an adventure?

    • #18246
      Carol Birch
      Participant

      I’ve noticed a lot of drool since taking Trikafta. I started Trikafta two years ago, and didn’t pay too much attention to the drool. I just thought it was another part of aging (I’m 62). But, Tim Blowfield’s discussion about the normalization of intercellular electrolytes has me very curious.

      My eyes are a concern for me now. Most likely my age, but I developed floaters shortly after taking Kaleydeco 3 years ago, and my eyes seem to be developing cataracts faster. A couple months ago, I was diagnosed with a pseudohole in the epiretinal membrance in the right eye. I was also diagnosed with Blepharitis in both eyes and I use a lid scrub and eye drops to help. These issues are likely just due to my age, but it feels like I have more issues with my eyes that prior to the modulators. I’m keeping my CF team posted just in case.

    • #18247
      Tim Blowfield
      Participant

      Not sure what a ‘pseudohole’ is but it sounds interesting. Drooling suggests that you are producing more and thinner saliva which for a pwCF is generally good. PwCF often have dry eyes & mouth similar to those with Sjogren’s (Indeed can have both) often causing swallowing difficulties. That the solutions within the eyes have changed should surprise no one – should be watched. So much still to know about CF!

       

    • #18507
      Tim Blowfield
      Participant

      Any more comments on this thread? Side effects or normalising effects of TK? What are CF Doctors saying? What is Vertex saying?

       

    • #18510
      Robert Lane
      Participant

      I was diagnosed with CF at age 73 (I’m now just shy of 78). One copy of the F508 deletion; the other a rare mutation. I’ve had asthma/allergies and related problems along with infertility, but no other symptoms I remember. I started Trikafta in January 2020 and immediately began having horrible diarrhea and lower leg swelling. I had never had problems with bowel movements before, though I did have occasional lower leg swelling from excess exercise since my two total knee replacements. I fairly easily mange the swelling by wearing compression socks, but the diarrhea has driven me nuts almost every day since I began Trikafta. I also generated significant hydrogen sulfide (H2S) containing gas. Trikafta really does a number on my gut biome. I can somewhat manage that by eating copious amounts of homemade sauerkraut or kimchi every day. (Commercial kraut, kimchi or probiotic capsules have little effect). I stopped taking Trikafta eight days ago and both the swelling and diarrhea stopped almost immediately.

      When I started taking Trikafta, my pancreas was functioning well (fecal elastase 264); but two years later I have very significant pancreatic insufficiency (fecal elastase 85 and 105 in two recent tests). The little info I’ve found on this is that many patients see an improvement in pancreatic function on TK. I’m wondering if anyone else has seen such a dramatic decrease.

      I didn’t see much, if any, noticeable improvement while on Trikafta, except perhaps a thinning of post-nasal drip mucous. My docs say I do have some improved lung function, but it has not affected my quality of life, and it really isn’t noticeable to me.

      I’m guessing there is scant data on side effects or efficacy of Trikafta in people of my age. Does anyone have suggestions on how to handle diarrhea caused by Trikafta? Any other comment on my observations?

      My care team has been working with me on these things, but they are reluctant for me to stop TK. I will start it up again–initially at half dose. We’ll see from there.

      • This reply was modified 3 months, 1 week ago by Robert Lane.
    • #18512
      Robert Lane
      Participant

      I am 77 years old, diagnosed with one f508 deletion plus a rare one in 2018. Been on Trikafta since January 2020. Have had severe diarrhea with lots of hydrogen sulfide (H2S) odor, plus lower leg swelling (exacerbated by having two knee replacements) every day since, unless (1) I eat copious amounts of homemade sauerkraut to get near-normal bowel movements and (2) I wear compression socks which manages the leg swelling. Commercial kraut or kimchi or probiotic capsules do not help at all. My team say my lung function has improved, but I cannot tell any difference. (Note that my CF is VERY mild compared to many). I did have M. abscessus cultured from sputum, but it disappeared about the time I started Trikafta (I had been nebulizing 7% NaCl for some months before Trikafta, and I think that is what got rid of the bacterium).

      I stopped Trikafta just over a week ago, and bowel movements immediately returned to near-normal and lower leg swelling disappeared. I am starting Trikafta back at low dosage, hoping to avoid these problems.

      Does anyone know how to manage diarrhea while on Trikafta? I’m ok when I’m home, but am terrified of traveling where I don’t have access to my homemade kraut.

    • #18513
      Tim Blowfield
      Participant

      Hi Robert, Sorry to hear of your issues. Restarting TK at a lower dose is reasonable. I would think your gut has been has been abnormal your whole life and is having trouble coping with normalization. Your Sauerkraut is good. I would add a probiotic and a soluble fibre supplement (eg Benefibre) both of which will alter the gut biome and reduce H2S production.

      • #18514
        Robert Lane
        Participant

        Many thanks, Tim, for your quick response and helpful suggestion. I will add the probiotic and fiber supplement.

        • #18663
          Tim Blowfield
          Participant

          Hi Robert,  How are you going? How is your gut?

    • #18676
      Beatrice Gallagher
      Participant

      Hello, has anyone noticed their ALT and AST numbers rise? My grandson started Trikafta 2/2020 on 10/2020 his liver enzymes shot up. He is 20years old, we’re transitioning from pediatric doctors to adult specialist. His adult specialist noticed protein in his urine and as precaution set up CT scan’s and we found out not only does he have cirrhosis but also kidney stones. Two months ago after finding out I changed his high calorie diet to a much healthier one. I removed all the butter and breads and cut his salt intake. His AST is now normal 23 and his ALT has gone down to 66 from 147 in July 2022. I’m wondering if Trikafta has also corrected the malabsorption issue and the need for high calorie and salt intake? I’ve heard a few other people with CF now having high blood pressure with the extra salts that were told is needed. Anyone else notice besides the extra weight one is now gaining any other changes that now need to totally change the diet to a more lean and much less salt one? I’ve been raising him since he was 18 months, he’s autistic and when I found this site , I was happy that I found a place where I can ask other people about their experience’s with CF and especially Trikafta. 😊

      • #18681
        Jenny Livingston
        Keymaster

        Beatrice, hello! While I have not experienced increased liver enzymes myself, I do know this is something that can happen with Trikafta. Something I do have personal experience with is higher blood pressure! As you mentioned, I don’t think it is a direct result of Trikafta, but rather a result of no longer needing all the extra salt I am accustomed to eating. Learning to change my diet and relationship with food has been one of the harder parts of being on Trikafta!

        Side note: I am so happy you found the forum! I hope others will chime in with their experiences and insight.

Viewing 13 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account