Trikafta Q&A, Experiences, etc.

[ChaosEst1979]

Were any of you able to start the Trikafta while dealing with a current lung infection, or did you have to clear up the lung infection first before starting the Trikafta medicine? I am supposed to start the medicine at my next doctor visit on Monday, but I can tell I have a lung infection again and wondering how that effect it.

 

[Mkos1980]

I get my first shipment in tomorrow. Ill be starting it on Monday the 9th. Well see what happens. I don't cough and rarely get anything up so it will be kinda exciting to see if I get this so called purge. Im 39 and my breathing is in the mid 70s now.

 

[Hail2Pitt]

Hi Chaos - I started taking it at the same time I was getting sick. Also, I know my doctors were able to get the drug on early access for patients who were very sick and in the hospital. So, I’d think you’d be able to start it on Monday, regardless of whether you’re sick or not.

 

[ChaosEst1979]

Hail2Pitt thanks for letting me know!

 

[nickbrah]

Let me preface by saying that I only have 1 F508 mutation so was never able to take any other medications like Orkambi or Symdeko so this is my first experience with this type of medication. I started Trikafta exactly 1 week ago today and let me tell you... it really does work. I could tell within 2 days that it was working. On my 2nd day, I was coughing up a lot more mucus that was very thick and then on day 3 or 4, I just stopped coughing and I have more energy I feel like. I barely cough at all anymore and I can take much deeper breaths without any "crackles". And when I do cough up mucus, it is very thin and white and just looks like saliva almost, rather than thick green or yellow. I don't have very low PFT's and my lung function has luckily been steady for most of my life, but there is still lung damage and my cough was generally productive in bringing up thick mucus. Now that I am on Trikafta, I can look back and notice in just a week's time how much better I feel. I was so used to feeling fatigued all the time and bringing up thick mucus and coughing that it just became my "norm" of daily living. But now I have more energy and barely cough and can breath better. I hope that Trikafta will continue to work well long-term and prevent us CF'ers lung function from declining. I am really happy for the medication to be available after years of research

 

[Mkos1980]

Like the above post I only have 1 F508 and was also never able to take anything. I'm 39 and my base is in the mid 70s. I started this past Sunday and within about 3 hours I coughed up stuff all day with what seemed to be little effort. I had a very mild headache and had a hot face. But felt perfect otherwise. I had the same amount of energy and did leaves outside all day with no issues. Second day was the exact same. But on the 3rd day I coughed very little and what did come up was a watery white mucas. No headache but slight hot face still. On my fourth day now and no cough and no side effects at all. I do feel I can hit a higher breath, but when I do its like I have to cough with it or I get into a dry cough frenzy for 5 minutes. Well see what happens.

 

[lilismom]

Hi all, Lili is 17. Really good lung function but does have some smaller airway blockage and sometime of mucus growth which was discovered last year. She also has diabetes which she is on long acting insulin for at the moment. Her endo dr thinks she will need to move to insulin with meals soon. I am really hoping the trikafta slows down the progression of diabetes. We got the Trikafta yesterday and since she doesn't want to miss school I was planning on waiting until xmas break to start in case she doesn't feel well and so we can keep a close eye on her blood sugar levels. My question is if you are diabetic, did you see a change in your insulin needs? Do you think it is reasonable to wait to start? My husband is mad and thinks I am being irrational. Thanks for any input. So excited this drug is now available!!!

 

[kenna2]

I've been on Trikafta for 3 weeks now and I have not noticed a change in my blood sugars. It might still be too soon to tell though. I honestly think you should start her on it now anyways. If you're nervous, just have extra snacks for her to take with her or if your worried about her being on the high side with her sugars, she can always do more to cover her highs.

 

[ChaosEst1979]

I had a Doctor appt to start the Trikafta on the 9th but instead was admitted into the hospital on the 10th. I have mrsa in my sputum and rhinovirus so they wanted to treat me with IV antibiotics and steroids first to get my PFT’s up and rebuild my body a bit first. I actually started the Trikafta this morning and my PFT’s jumped up to the highest score I have ever had. On the 9th, I was a 74% and today a 96% after just my first dose of Trikafta. The highest I have ever had before was a 92%. In any event, I am already suddenly coughing mucus up each time when I haven’t been coughing any up previously at all. I also feel very jittery on the medicine, which I haven’t heard anyone else mention before. It feels like I did a lot of breathing treatments back to back and like my heart is racing. Otherwise, I feel fine today. Hoping that is the worst of the side effects for me. So far, this has been the best of my modulator experiences of the three. I will keep everyone posted.

 

[Ratatosk]

DS has been on Trikafta for 10 days and has been experiencing stomach pain off and on. Hopefully this will pass soon

 

[Mkos1980]

All my side effects are gone but I did notice I'm jittery as well. And I did tell my doc it's like 24/7 breathing treatments back to back and she said some people have that. Still good but 2 weeks into it now and I have a cold. I wonder if it's another side effect. I notice a common cold per the book is a common side effect. How is that possible?

 

[kenna2]

All my side effects are gone but I did notice I'm jittery as well. And I did tell my doc it's like 24/7 breathing treatments back to back and she said some people have that. Still good but 2 weeks into it now and I have a cold. I wonder if it's another side effect. I notice a common cold per the book is a common side effect. How is that possible?

When it comes to testing and side effects, any symptoms that occur during a study are recorded as a side effect because they don't know what's from the med and what's not. The flu is listed as one too. Just to show that this med has no effect on it.

 

[Ratatosk]

Day 12 ds had well teen visit and dr indicated stomach and upper/middle back was muscular if it becomes unbearable to contact cf team, but meanwhile heating pad, ibuprofen and staying hydrated he say is feeling better, so powering thru. Also a couple days ago sneezed and some old, hard mucus pieces came out. And last night, his first ever lung plug rattled to the surface.

 

[erock77]

Similar to others.. I'm 10 days on Trikafta, single dF508 w/ a nonsense mutation.
I was feeling sick and congested before my appt last week, I would normally start antibiotics but I thought let's try Trikafta! I'm 42 and FEV1 was ~55%.
Within a few hours of the first dose the thick mucus started just moving out. Not too dramatic, just a productive day, came out easy. By the 3rd day it reduced dramatically, by 4 & 5 I was hardly coughing and there was no thick mucus. It got progressively thinner where it's just light yellow now. I still have to clear my throat and have sinus symptoms still, time will tell if more impact is made. But it's been amazing. I can take deep breaths and don't feel the mucus, congestion or inflammation. My only noticeable side effect was a sore throat for a couple days, which may have resulted from my cough getting dryer. Coughing is weird now, often just one or two coughs at a time and it feels odd to not have much mucus or impact from coughs.

I've cultured MRSA for the past 10 years and I'm curious for my next appt to see impact on FEV1 and cultures.

 

[ChaosEst1979]

Day 8 for me on Trikafta. From day one on the meds, I noticed no longer having any GI issues and loving that part! I also noticed I now have increased energy and better breathing today. Still haven’t had a purge period to date. My doctor’s office said not everyone has one, but I still wonder if mine will just come later. So far, I am loving this new medicine! I have a weird headache every day but I also started unrelated meds at same time so it could be from those. Not sure.

 

[Ratatosk]

Day 25 for DS. His muscle pain in his back and stomach went away at about 14-15 days. He said when he blows his nose it's much easier to get stuff out. His mucus isn't as sticky. Is able to breathe deeper. In gym class he said he had more stamina and better scoring when they did physical fitness testing. Still seems to be getting stuff out, though not as much. He does have some skin issues. Back and nose where he's had blemishes in the past have a few bigger eruptions. Nothing major, just not his norm. Culture that he had at the clinic a couple weeks ago was normal flora and epithelia cells; however, he was unable to bring up any sputum, so they did a throat culture.

Got a little nervous as I called for a refill when he was down to almost a week and was told it was too soon to reorder. Plus my husband lost his job, so we're switching to my insurance at the beginning of the year and didn't want to run out if we had to go thru the pre-approval process despite it being the same insurance. Managed to get a refill delivered this morning. Phew!

 

[Mkos1980]

Almost 4 weeks in, no side effects now. Breathing is fine. Very watery white mucus. Mucus is almost non existent now. I also had a bad cold within the last 4 weeks that lasted 2 weeks and no real chest congestion. Kinda cleared itself out. Usually id battle with green mucus for a few weeks after but nothing. Also up 8 lbs.

 

[ChaosEst1979]

Weird question here but did anyone notice changes in hair? My hair is suddenly super oily lately and I am wondering if it has to do with processing vitamins/nutrients differently on Trikafta now.

 

[telton21]

Well, Currently my daughter is in the hospital but we just started TriKafta. I am praying for good results.

Teresa

 

[PeterXC]

I had a Doctor appt to start the Trikafta on the 9th but instead was admitted into the hospital on the 10th. I have mrsa in my sputum and rhinovirus so they wanted to treat me with IV antibiotics and steroids first to get my PFT’s up and rebuild my body a bit first. I actually started the Trikafta this morning and my PFT’s jumped up to the highest score I have ever had. On the 9th, I was a 74% and today a 96% after just my first dose of Trikafta. The highest I have ever had before was a 92%. In any event, I am already suddenly coughing mucus up each time when I haven’t been coughing any up previously at all. I also feel very jittery on the medicine, which I haven’t heard anyone else mention before. It feels like I did a lot of breathing treatments back to back and like my heart is racing. Otherwise, I feel fine today. Hoping that is the worst of the side effects for me. So far, this has been the best of my modulator experiences of the three. I will keep everyone posted.

Hi there Chaos!
Amazing improvement on your PFTS!
Like yourself I also culture MRSA. I am just wondering if you have one or two copies of F508?
Hopefully the jitters subside.

- peter