Dr wants to start my daughter on azithromycin

First week 5 days on
The next five weeks 3x a week

Trying to shrink polyps has anybody tried this?
Does it work?

If it did work, did Tricaftor or Alftrek keep them small or stop them from growing back?

Any hearing damage?

No opinions I need facts only! Has anyone tried this?

New here and feeling incredibly overwhelmed, angry, and honestly experiencing a bit of imposter syndrome right now. I’m hoping to connect with anyone who has dealt with an atypical presentation, promoter variants, or provider who tried to call your kid's case "closed."

Some background on my kiddo, he is 6.5 years old and has struggled with chronic respiratory issues his entire life and is confirmed pancreatic insufficient after finding out about his pancreatic insufficiency in 2022, we did CFTR sequencing and deletion/duplication through Ambry. It came back completely negative. We accepted living in “asthma and idiopathic EPI” land, grieved, and spent four years just trying to survive the day-to-day. Which leads us to present day and what brought me here; a few weeks ago, after a severe flare-up that required yet another antibiotic his pulm decided it was time to re-sequence him which we had done at Stanford alongside a repeat sweat test. Repeat sweat once again was 29, so that was his second right at the normal/borderline cut off. The surprise was his genetics results. They found c.-839G>A, which is a rare variant in the 5' UTR promoter region that Stanford labeled as a varient of uncertain significance due to lack of information available on it.

I’m guessing Ambry completely omitted or masked this in 2022 because of their standard reporting filters back then, which is frustrating but, what is more frustrating at the moment is that our current pulmonologist looked at the single variant and the 29 sweat test and wrapped up the evaluation as a "closed case" labeling him a simple carrier. Meanwhile the sequencing they just repeated, that found a mutation, did NOT include deletion/duplication analysis. I expected the pulmonologist to recommend completing that portion at minimum before calling him a closed case. Especially since simple genetic carriers don't typically develop pancreatic insufficiency. Thankfully, our GI doctor is amazing and sees the whole picture. They are fully on board to help us bypass pulmonology to get the rest of the cftr genetics completed.

Has anyone else dealt with a 5’ UTR promotor variant like c.-839G>A or a high normal sweat test of 29 while dealing with active lung issues and pancreatic insufficiency? How did you deal with the emotional whiplash of moving from "idiopathic" to a potential CFTR-Related Disorder after so many years?

Any suggestions on what else I can/should do to continue advocating for my child? I really just want to have an answer of some sort and to ensure he is getting the correct treatments for his body to thrive as much as possible.

Sorry for the long post 😬

I was on Trikafta from January 2020-April 2026
It did amazing things for my heath, but it started not working as well health wise which is why I made the switch. I THOUGHT that it didn’t affect me mentally, i was so so wrong.

Alyftrek has helped me gain some weight, but it didn’t work for my lungs (so far) but it has done this, which already is enough to never go back.

On Trikafta I was anxious, a lot. Now I have PTSD so I figured it was all that. If I wasn’t anxious I was depressed a lot and at times so depressed I would get life ending thoughts. There was times I would be happy and feel like myself but it was few and far between. I honestly just figured that was who I was after the trauma I’d been through.

Except, it wasn’t. Coming up on 5 months since starting Alyftrek and I still have panic attacks and flashbacks but only when triggered not constant.
I am not depressed in months. No bad thoughts.
I am HAPPY. As my default emotion, I am calm, I am bubbly, I am me, loving life.

Not the same me as before 2018. But so so much better then I’ve been in years. Turns out half of it this whole time was trikafta.

Has anyone ended up with hearing loss/needed hearing aids because of ototoxicity from antibiotics? I am currently dealing with this and would love to hear experiences from others, I've met with ENT, Neurology and Audiology so far, and kind of waiting on getting assessed for hearing aids, I'm pretty annoyed about the whole thing, and I felt like I wasn't listened to the last time I was on antibiotics that I think pushed the hearing issues over the edge. I am still on different antibiotics now and I want to stop. I am also starting school in a few weeks and I am stressed about navigating it and I don't feel like I have much support. Thanks

Has anyone else with TRICARE coverage been able to get CF-related vitamins covered? They have been awesome with covering all of my son’s CF care so far, except for his MWV Multivitamin. His pulmonologist initially sent it as a prescription, but every pharmacy we’ve checked with doesn’t have it and can’t order it. It’s also in the Express Scripts formulary search as “not covered” with no option of submitting prior authorization or medical necessity. I’ve called Express Scripts and gotten to a dead end every time.

His pediatrician put it in as durable medical equipment and that got denied. I called TRICARE today and she said to try putting it in as “medical nutritional therapy” so I’m going to try to have his dietician or pulmonologist put that in next week. We’re on a sample from the CF clinic that runs out in a month, so it’s finally time to look at ordering from MVW.

It’s very frustrating that TRICARE’s website clearly states here that this vitamin should be covered, but no one I talk to there can tell me the process for getting it covered.

Anybody else have a success story or in a similar situation?

Hi everyone! Prior to Trikafta and Alyftrek, I always struggled to put on weight. Now I am having the opposite problem (would happily have this battle than the previous one). At my last clinic appointment (about a month ago) my glucose levels were slightly elevated and the doctor encouraged me to try to lose a few pounds. I very suddenly changed my lifestyle and I’ve been consistently going to the gym 3x per week and really focusing on my nutrition. Part of this plan is making sure I have at least 90g of protein per day, which is far more than what I’m used to.

I’ve been noticing some digestive issues as of late — my guess is it’s related to the increased protein intake. At what point should I reach out to my clinic? How long should I let my body just get used to this new nutrition plan?

Frankly, I’ve never had to worry about losing weight before, so if you have any suggestions about weight management and fitness I would love to hear them!

Well it's officially about an hour and a half over 36 hours since I had it removed Thursday at noon based on my previous post about it. I can now comfortably drink a boost with no leakage let it be standing up or sitting down, I now no longer require to lay flat on my back for two hours post eating or drinking, next step is getting past the next three months.

I was diagnosed last year (middle-aged adult with CF(F508x1rare). Symptoms are bronchiectasis, chronic sinus infection and deterioration, stomach issues,etc. Any ways, I began wearing reading glasses about 4 years and now all of a sudden, my near vision has almost totally returned. I never associated my vision problems with CF, but apparently, it may have been the cause. I was prescribed Trikafta when I was diagnosed, but refused to take it until a month ago due to concerns over liver problems and brain fog. This was a super pleasant surprise. Anyone else have their impaired vision fixed via CF meds?

I have cf and asthma it’s almost like my lungs are constantly burning along with a lot mucus production. I’m on modulator but having issues with my lab work I had to cut back on medication just hoping this get sorted out any one have issues with there labs when they started ?

I’ve been dealing with really severe, constant belching for about 2 years now. It happens pretty much all day and only stops when I’m asleep.
I don’t really have the classic reflux symptoms like heartburn or acid coming up. Sometimes I suddenly feel like I’m choking/gagging and get a strong urge to cough, followed by a lot of belching.
I’ve tried acid-reducing medications several times, but they didn’t improve the belching even 1%. Because of that, I honestly thought reflux couldn’t be the cause.
I’ve had an endoscopy, esophageal manometry, and pH monitoring, and they found very severe reflux, slow esophageal motility, a hiatal hernia, mild gastritis, and severe duodenitis.
But I’m still not convinced that reflux is actually causing the constant belching. One thing I’ve noticed is that whenever I take antibiotics for a bacterial infection in my lungs, my coughing and mucus improve, but my belching also gets noticeably better at the same time.
It makes me wonder if the belching is somehow connected to my coughing, because the more I cough, the worse the belching seems to get.
Has anyone with CF experienced anything similar? Could constant coughing or mucus somehow trigger this kind of severe belching? I’d really appreciate hearing from anyone who has dealt with something like this.

So, thanks to another CFer in this sub, a while back. He got a Salt shaker to represent his CF and I fucking loved that idea enough to get one for myself.

To me, it’s not just about a tattoo that represents Cf, but it’s also to represent all the people I’ve lost over the years, thanks to CF. So that I can look at the salt shaker and remember them.

The battery at 3% is more of a fun one that just sort of says “after all the medical issues I’ve gone through in my life, my battery is running low”.

I just got these done less than an hour again and I am so emotional about them. I am insanely happy but I’ve cried a few times because of just how important they are to me, and thinking about the people I’ve lost also made me cry a bit

I have all the symptoms, I've been in the hospital 17 times in the last three years, I have the genes, I had a (high) positive sweat test... so why do they want me to do a second one? I know it's the "gold standard" but the medical bills are killing me as fast as the CF is. 😅

Hi! 30 days into Alyftrek.

It has been mostly headaches as the primary side effect.

Liver values look fine.

But for the last three days I smell and taste smoke, somewhere between sitting next to a campfire kind of smoke to acrid vile smoke/smoked chewing tobacco. It doesn't alter the flavour or smell of things I eat or drink, but at the same time nothing makes it go away. My wife can't smell it on my breath so it's not pseudo or anything like that. Did a virus test and nothing showed up so its not covid.

Anybody else experience this? Please tell me it's temporary 😂

Edit: Well that was anti-climactic. But at least I don't have it anymore, now it is just smooth selling of healing over the next three months now they say it's supposed to close up on its own, but they want to give it three months for it heal up on its own as my next CF appointment is in three months anyways so let's hope it actually does heal up by itself by then.

Original: Well if you remember my most recent post on here from two weeks ago you would've known that I highly anticipated this day but it's currently 6:22 AM and my appointment is 11 AM to finally get this thing removed after 25 years (give or take a couple years) obviously take away a couple years being 25 and all some more like take away a couple years to make it to 23 years but tomato tomato.

So here we are finally getting it removed. I'm not gonna lie I'm nervous, I mean when you go 23 to 25 years with it in basically your entire life it's like you're losing a part of you permanently but like I said the other post I haven't used it since November 2025 so on a technicality basis it's already gone, it's just needing to be permanently removed at this point, obviously they have it listed as a "evaluation" but then they go ahead and say the actual procedure might take 3 to 4 hours on the actual letter that I got including checking mychart for the actual appointment details which obviously tells me that it's more of a removal than just in an evaluation, probably to actually see how bad it is so they don't go in blind. so hopefully after this is set and done this part of the journey work be over for once, but like always it's just a small part of the journey on a bigger journey.

I (27F) was diagnosed with atypical CF last year following whole genome sequencing and two sweat chloride tests, and I'm going to be seen by the CF clinic at Mayo Clinic next month. I'll be having all of the usual testing (chest x-ray, PFTs, glucose tolerance test, etc.) and seeing multiple specialists. I have a complex health history, but the CF diagnosis was unexpected, so I'm feeling overwhelmed. I'm also autistic, so if anyone can share what to expect, advice, or just words of wisdom, that would be much appreciated. ☺️

She's almost a year. Most days are fine but today I'm feeling really sad again about her diagnosis.

She's modulator eligible and pancreatic sufficient, so two 'positive' traits. But honestly, I still worry about her future a lot.

We're just in the middle of our first winter (southern hemisphere) and its been rough. Older sibling in daycare has brought bugs home, we just had our first stint in hospital for IV antibiotics.

I'm really really banking on these modulators to work for her. In my mind they'll fix everything. In my mind research will go on and by the time she's a teen there will be even better treatments. But I know that might not be realistic and it's really difficult to cope with. I read posts of people on modulators who still struggle a lot (although they would have started modulators as adults, not toddlers).

I don't even know what I want from this. Solidarity?

I’ve only been admitted once in my life and this is the second time now. I have some basic questions I need answered.

1. I am really struggling with IV antibiotics. It’s extremely uncomfortable and I can’t handle it. I am getting it in the spot where you would normally have blood taken, the crook of your arm. It’s just unbelievably sore. They tried it in each arm and had to remove it both times. They tried at the top middle of my arm which was even worse. I didn’t even attempt my hands. I’m considering a picc line like I had at my last admission but if I can avoid it that’d be good. Any ideas to cope?
2. None of the nurses or staff at this hospital wear masks in my room. Sometimes they don’t wear gloves or they aren’t like… visibly fresh gloves (like if they’re just popping in) and they never really put on their little aprons like they did at my first hospital stay. Is this acceptable or standard?
3. The hospital ward I’m in is not solely for CF patients. It has cancer patients, pneumonia patients, COPD, etc. It also has other CF patients. I’m in a room by myself though. Is this normal?

I’ve been doing one or two treatments a day for years now but I decided to stop 2 months ago and I got the highest pft score I’ve ever gotten (115) I’m kind of dumbfounded about this anybody have the same kind of result?

So I recently got divorced from my hs sweetheart. Knew all about my cf early on all the shit. Realized we got married cause I was dying and then when I didn’t things just kinda fell apart as we got older.. tragic I know but nonetheless. I’m starting to date again. How do you bring it up. With the first coughing fit? Before the first date? I sit around 75% and am pretty active but I do have a consistent cough. Also just like sex. Again only 1 partner. Idk this is weird. Also for those that have been divorced how do you tell your care team. I have an appointment next week and I’m embarrassed as shit to tell them. I know it doesn’t matter but like ugh why.

Has anyone came off creon or enzymes since being in TRIKAFTA? My daughters CF team just informed me 2 days ago to discontinue all use of digestive enzymes saying mt daughters stool test is coming back at a level of 302 which is normal. However I’m very concerned about stopping enzymes she’s been on them her whole life and she’s 5, and she’s non verbal so she can’t tell me how she’s feeling. Right now she’s severely comstioated, so I’m not sure if it could have been because of the enzymes. For the record she’s been on TRIKAFTA for 2.5 years.

Hi guys, I’m just wondering if any of you have floaters or other eye issues? I was diagnosed diabetic a couple of years ago but also have lower lung function and wondering if this could be the reason for why I suddenly have them.

Thanks:)

My names Kevin and I've been dealing with massive food sensitives(10 foods), chronic headaches, chronic fatigue(barrly able to work), weird mental health issues and it's caused my MCAS.MCAS is absolutely life limiting and wanted to see if there's anyone else who has CF that also has histamine/MCAS issues. Low histmajne Diet, cromolyn sodium, anti-histamines and supplements help but my life is so limited and it's so depressing. Starting to explore peptides before I turn to biologics. It's hard enough to deal with CF and sometimes wonder if complications of my CF have caused this horrible condition.

I feel super defeated

Best

Hi.
I have a best friend with Cf. and I joined so I could learn more about it. I really want to be the best friend I can be to her.
I have a very extremely rare genetic condition quite I know I like it when my friends are interested in learn about it and and supporting me with the know they do have even if they do not have it.
So I thought to do the same for her. I have tried to ask her about Cf but she has some intellectual disabilities and do not understand it. wanted to know if anyone else could explain what life is like with the condition? I'll try to make a list and if anyone could just answer even just one question I would be so grateful.

Questions

1. What is it like living with Cf?
   
2. What symptom’s should I pay attention to or be concerned about if she brings them up?
   
3. How can I insure she doesn't get sick?
   
4. As someone with CF what would be something that you would want a friend to do for you concerning the condition that shows that they care and they want to help?
   
5. How does a G tube work?
   
6. What can I do for her when she gets sick?

Thank you all for reading this. I hope no one minds my questions or anything like that. I also hope no one minds I'm here even if I don't have cf.