45 finally diagnosed with CF, treating with Alfytrek: Anyone else?

@combineguru, I hope you find that light at the end of the tunnel. I was diagnosed much later than you, at the age of 72 five years ago. I'm on a different modulator than you are, Trikafta, and after an initial "purge" of junk from my lungs I actually felt much better. Like you, however, I do experience some sinus blockage affecting my ears. Do you use any kind of nasal rinse? I've found that helpful as a nightly practice.

Yes, I use sinus rinse and a navage. It's pretty chronic. It's been going on all my life. Honestly, when I kept seeking help to find out what was wrong with me, it was the sinus congestion that I struggled with most and let's just say unnormal bathroom habits I believe coming from my pancreas. I'm 5 weeks in. I just feel so sick. I feel everyday multiple times a day like I'm dying and I worry it will be like this until I'm too weak to recover

@combineguru It really sounds like you need to go back to your doctor(s) to adjust either your medications or treatment to give you some relief. I'm really sorry you're going through this!

@combineguru, sorry to hear the side effects of Alfytrek have been challenging. I'm tagging @tw508 @helen1000, who have experience or knowledge of Alfytrek and may have more to share.

Combineguru, are things getting better? Were any adjustments made to your treatment?

Hi Colleen,
I am taking Trikafta starting from Arpil this year as I am not qualified for Alfytrek. Only patients who can't tolerate Trikafta will be prescribed Alfytrek. However Trikafta is an older medicine and has more patient feedback so this is an advantage for us.

It gives me immediate weight gain ( 6 pounds so far), watery mucus ( instead of thicker mucus), and better energy. I highly recommend this medication to all CF or CFRD patients like me. The only concern is it may spike liver enzymes, so try not to take it with other medication that may increase liver burden. One side effect I experienced is light rash in my hands, swollen lips and itchy eyes at the second week taking it. It was gone after 2 days so I continue taking the medication.

Another benefit it brings me is that my brain fog and long-term fatigue are gone, and they bothered me in my whole life. I used to have weak legs and can't tolerate intense physical exercise even though my lung function is excellent. Now I can jog continuously as long as my knees allow me.

I also did some research and found Trikafta may reverse bronchiectasis so some trials is evaluating on how Trikafta improves bronchiectasis.

Overall I am only a new patient on this medication and this is my experience so far. Over the time of treatment, I may have more feedback on benefits and side effects, etc.

Hope this helps!
Helen

@helen1000 That's a great report on your recovery from so many issues. My experience with Trikafta has also been positive; I've been on it for five years and I never had the side-effects you mentioned. During that time, my macrocytic anemia has gotten worse, and my pulmonologist did wonder if the Trikafta could be affecting it, but the anemia is likely due to something else. It's great that you're now able to exercise!

So currently I'm taking just one pill as fatigue and mental fog anxiety was too much to bear. Breathing has gotten easier. I can tell the the mucus is more watery. And getting things like sore lymph nodes in my neck. I believe from all the drainage from my ears. My congestion was always more from the neck up than the lungs. I'm trying to stay the course and figure out what the right balance is.

@ckscoville Thanks Pug, I understand your confusion. I am sure any drug with long term use will cause some physical issues over our body. Even though there is no direct link between Trikafta and macrocytic anemia, I still suspect Trikafta may cause some mutation that leads patients vulnerable to some diseases. Are you taking B12 to treat it? Maybe you can consult
hematologist to get some input? I hope you get better!

@combineguru Sorry to hear that you get brain fog. I do get insomnia after I take Trikafta. I used to have 7 hours sleep but now I only have 5 hours. To help my sleep, I take Trikafta at 5am/5pm. I will see whether things get better with time going on which many patients say. Good luck to us!

@helen1000 I appreciate your concern. My macrocytic anemia continues to be a mystery. I've seen the hematologist at Mayo and I've had a number of tests, etc., to determine the cause. I take heavy doses of B12, Folate, and Iron daily, and blood tests have revealed no shortages of those in my system. My bone marrow was also checked. Currently taking periodic injections of retacrit to boost my hemoglobin, but I'm experiencing some unpleasant side effects from those injections and my anemia has not yet improved. In time, however, I remain optimistic that the Mayo doctors will find the cause of my anemia as well as the right treatment for it. I would love to have more energy!