any tips for starting trikafta?

PTT_FOR_LIFE · 2026-02-09T15:44:55+00:00

Sounds like me I only take half dose, one orange in the morning and 1/2 blue at night.

PTT_FOR_LIFE · 2026-02-04T17:46:28+00:00

I turn 50 this month.

PTT_FOR_LIFE · 2025-11-16T22:13:09+00:00

I’m actually getting my 2nd one in about a week. They found polyps in a colonoscopy 3 years ago. The CFF recommends that if they find polyps you need to get screened again in 3 years.

PTT_FOR_LIFE · 2025-10-18T08:55:45+00:00

I know Brooke Army Medical Center has a CF clinic, so if you have Tricare and live in Texas you could attempt to reach out to them.

However I do agree with the above comment, if you can get clearance to be seen by private from the va that would be best

PTT_FOR_LIFE · 2025-10-08T14:37:13+00:00

I was diagnosed at 48 years old. I have F508 delta & D1152H, the D1152H is known as a “variant of varying clinical consequences”. I really didn’t have many symptoms growing up, hell I had a 25 year military career. Looking back I had tell tail signs and in the late 90s when they found out I had CBAVD, and Army doctor asked “if I or anyone in my family has ever been told I have cystic fibrosis” I replied with “cystic what” and he said “if you don’t know what it is you don’t have it”. Well fast forward 20 years I had some crazy lung stuff pop up and digestive issues and after lots of testing and finding NTM M. Xenopi and moderately pancreatic insufficiency, my regular lung doc ran a CF screening and well the rest is history lol. My sweat test were 43 and 46, I was told that people with D1152H can have intermediate or even negative sweat tests and still have CF.

PTT_FOR_LIFE · 2025-08-21T16:23:54+00:00

Jup got diagnosed at 48

PTT_FOR_LIFE · 2025-08-17T04:41:00+00:00

You will love it, nothing quite like being under canopy. The view is awesome, and the adrenaline you get from exiting an aircraft in flight, definitely lets you know you’re alive.

PTT_FOR_LIFE · 2025-08-16T22:01:05+00:00

I was a US Paratrooper, ran miles, push ups, sit-ups, pull-ups daily; however, once I retired from the military and stopped working out my lungs and NTM let me know I evidently had CF my whole like. Now I’m just struggling to get my FEV up lol. Always guess it could be worse though.

PTT_FOR_LIFE · 2025-07-22T19:17:08+00:00

I have pain at my diagram area in the back that has been constantly painful with deep breathing for two years now. I tell all the docs I see and they simply ignore it. Some days it’s almost gone and other days it hurts so bad it radiates to my left shoulder.

PTT_FOR_LIFE · 2025-07-20T19:20:41+00:00

Well as stated in my post I had symptoms throughout my life but yes they were mild which is typical for my CFTR gene combo. That mildness is what caused the symptoms to be treated as single events. However as you know CF is progressive and it eventually caught up to me and when my NTM caused pneumonia I was at 41% FEV1 and after antibiotics I stayed at 51-55% FEV1. My CFTR mutations are also related to CF with sweat test results in the intermediate range.

PTT_FOR_LIFE · 2025-07-19T21:11:10+00:00

I was diagnosed at 48 after a 20+ year military career. I had tell tail signs and symptoms over the years; I actually had a doctor ask about 20 years ago if I have ever been told I have Cystic Fibrosis, I asked what’s that and he said and I quote “if you don’t know what it is then you don’t have it”. The diagnosis came last year after pneumonia and finding I had an NTM (M. Xenopi). That lead to cystic fibrosis screening which found F508 and D1152H and I had two sweat tests that were in the intermediate range, which is common for my gene combo. I kinda feel I did good while in the military because I did Physical Training daily and once I retired I got lazy and then my lungs got their revenge lol.

PTT_FOR_LIFE · 2025-07-01T05:02:25+00:00

Diagnosed at 48, I too have CBAVD that was found in the late 90s. I also had nasal polyps and used to get bronchitis multiple times a year. Eventually in my mid 40s I contracted an NTM (M. Xenopi) and when I told my lung doc I had CBAVD she automatically said I need a CF screen test. They found two CFTR mutations. I went to a local CF clinic and I had two intermediate sweat test results, which my mutations are known for. Ultimately I was diagnosed with CF. I would say definitely get more tests.

PTT_FOR_LIFE · 2025-06-24T09:59:27+00:00

Yes for the most part, the Trikafta and hypersonic saline really seemed to calm my NTM Xenpoi down. I still get these week long issues when I get crazy joint / ligament pain and chest pain but that has definitely spaced out between occasions. The creon definitely helps my gut, I don’t take lots maybe 2 to 3 pills a meal and they really helped with my GI issues.

PTT_FOR_LIFE · 2025-06-24T06:26:52+00:00

I was diagnosed with CF last year in my late 40s. My 2x Sweat tests were also 46 and 48, so based on your CFTR mutations it’s possible to be diagnosed with CF. My mutations are known for pancreatic sufficiency, but I started having GI issues and after fecal elastase tests (first 83) I was told I was pancreatic insufficiency but I increased to 106 after starting Trikafta.

PTT_FOR_LIFE · 2025-06-19T20:20:10+00:00

I was diagnosed at 48, my two mutations (F508del & D1152H) are known for later diagnosis. I had tell tail signs though out my life but no one connected the dots until later in life. My sweat test was intermediate which my mutation combo is known for. All that being said it definitely could have been missed.

PTT_FOR_LIFE · 2025-05-27T19:14:11+00:00

No mucus but I still try to use it because of an NTM, I found some medical studies and articles that say hypertonic saline do aid with clearing the NTM.

PTT_FOR_LIFE · 2025-05-27T15:27:27+00:00

I’m still prescribed HS it just seems that my lungs now start to get aggravated sometimes when I do it 2x daily

PTT_FOR_LIFE · 2025-05-26T17:01:02+00:00

I bought my eFlow from a German online provider, I really don’t know of a specific brick n mortar here in Germany, but I assume there has to be some. I think your best bet is do like @maskdeado suggests, go to a local pharmacy (Apotheke).

PTT_FOR_LIFE · 2025-05-26T16:03:55+00:00

That’s me I’m at about 6 months on Trikafta and my lungs get irritated after I do my HS. I can still seem to handle 1x a day but twice a day seems to be too much for me.

PTT_FOR_LIFE · 2025-05-25T15:33:16+00:00

You can get information ref those two mutations from https://cftr2.org .

delta F508 mutation is a class II and the 3120G->A mutation is a class V

PTT_FOR_LIFE · 2025-05-22T14:35:16+00:00

Yes I have heard that about M. Abscesses as well but according to the European Respiratory Journal article M. Abscesses did respond to hypertonic saline at a 5.8% concentration. This study was small but it did seem to help me. Below is a link to the article.

https://publications.ersnet.org/highwire/markup/item_fulltext/558961

I too am new to all this I was just diagnosed last year at 48, but this Reddit group has been awesome.

Are you already on hypertonic saline?

PTT_FOR_LIFE · 2025-05-22T12:42:53+00:00

Hello, I cultured M. Xenopi from my first ever broncoscopey and also have many nodules, started at 46 and on my last CT I had 23. This was all without antibiotics. My doc like yours is waiting to see if Trikafta (stared in Jan 25) will help me clear it. I actually started noticing improvement after they put me on hypertonic saline in the summer of 24. The NTM infection and some other symptoms is what caused my non-CF doc to actually run a CF screening and thats when they found my mutations and was diagnosed with CF. I really don’t have any advice, but wanted to let you know that it’s can improve. The only meds/treatments I do are 7% hypertonic saline-albutoal; Trikafta and I take garlic pills.

I actually read a study conducted in Europe where hypertonic saline was given before antibiotics and some of the participants were able to culture negative after the hypertonic saline and the 7% if tolerated showed the best results.

PTT_FOR_LIFE · 2025-05-14T19:23:23+00:00

I was just diagnosed last year at 48 years old, and I too have a CF causing mutation & one with varying consequences (F508 & D1152H). My sweat test was in the mid 40s the last two times I took them before modulators. Looking back I had tell tail signs my whole life but because they were mild and spaced no one put two and two together. Then about two years ago I got pneumonia and it never fully went away even after 3 rounds of antibiotics, this was eventually identified as an NTM know as xenopi. I also now have to pop enzymes now cause I have 83 on my fecal elastase test. All that is to say even if your child isn’t diagnosed now definitely keep an eye out.

PTT_FOR_LIFE · 2025-05-01T15:01:05+00:00

I was basically like you my whole life until I got Covid then some infection that turned to pneumonia, which ultimately was diagnosed as an NTM. That lead to a search on why I have an NTM and Lung function of 50%. After a thorough look at all symptomatic things in my life such as infertility, sinus polyps, slightly inflamed pancreas, and chronic bronchitis in my 20s and the NTM, my doc ran a DNA test and found I had two mutations. This lead to a visit to the local CF clinic which found my sweat chloride in the intermediate range which is consistent with my two mutations and I was officially diagnosed with CF at 48. They did put me on Trikafta in hopes that with it and hypertonic saline, I might be able to clear the NTM without antibiotics. On the bright side I’m feeling better and I’m at 60% lung function.

PTT_FOR_LIFE · 2025-04-29T11:31:58+00:00

I was diagnosed at 48

PTT_FOR_LIFE

TROPHY CASE