My pulmonologist said the grapefruit medication reaction generally is not an issue if you wait at least 4 hours after consuming grapefruit or cannabis products. He also says it is more important for me to be able to take Ofev than worry about any interaction. I had to completely stop taking the only type of medication for CPFE. I am in stage 4…

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I was approved for Ofev. I have never been so sick. Even at a low dose nausea medication did not work. Primary suggested 5 mg thc gummies. Legal in Nevada. I am back on Ofev and my pulmonologist said it’s safe to take 5 to 10 mg with all the other medications I’m on. It was a game changer for me. It has also helped my night time cough. I do…

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Please don’t believe what my nurse daughter says is GOOGLE doctor. I have CPFE with a worse prognosis than ILD. Mine is pulmonary fibrosis with emphysema. I read 1 to 3 years. Went home and read the same prognosis over and over. I was in shock, thought it was pneumonia or COVID again. After my second HRCT and a long discussion with… Read more

Update to my post on mental health. Have been seeing a therapist so unstand this is not a death wish. I have made a decision for my own disease progression and it applies to my case only. I have discussed with my pulmonologist, my therapist and my primary care my wish to discontinue all medications, CT’s and care for my CPFE except oxygen.… Read more

I got COVID the end of December 2019. I was treated for several lung infections. My primary care sent me to a pulmonologist after 8 months of COVID shots and boosters. I had the normal testing and a HRCT. The pulmonologist diagnosed me with pulmonary fibrosis. Six months later I had a follow up HRCT where they discovered I also had emphysema.… Read more

My pulmonologist suggested that anyone with my lung disease CPFE see a therapist to help with the up and down of depression. When I first started researching pulmonary fibrosis with emphysema I became very afraid and depressed. My therapist has been wonderful. I know my lung disease has a poor prognosis. I have my affairs in order now and… Read more

I was prescribed Trelegy and it was a game changer for me. Within a week the cough was completely gone. I started at the 100 mg inhaler for about one year and am now on 200 mg. It’s been a game changer for the wracking cough I had. It is an inhaled medication that you use once a day. It lasts the full 24 hours.

I need to add my doctor has recommended OFEV on my last two visits. I have chosen not to take that route for a few reasons. The first being, the multiple side effects and second my insurance doesn’t cover it.

So far there have been no new significant changes since my last visit. I am still on Trelegy 200 mg per day, oxygen o4 lpm. 24/7. Thank you for all of your responses.

Has your doctor recommended Trelegy. It is an inhaled medication taken once daily in 100mg or 200 mg. I thought nothing would help my cough until my pulmonologist put me on it. I have CPFE combined pulmonary fibrosis with emphysema. Within a week my cough was completely gone. I have been changed to the higher dose and do have some cough… Read more

I was initially diagnosed with pulmonary fibrosis and one year later CPFE (combined pulmonary fibrosis with emphysema). I’m interested to know how many other people have this combination. My pulmonologist says it falls in the rare disease category. It seems like most of the people on this site have very similar experiences except the… Read more

I agree with some of the others, get a new doctor. There are many different treatments and medications out there. I was prescribed Trelegy an inhaled combination of three medications. It was a game changer for my cough. I no longer wake up with the cough. I also put a humidifier by my bed so I am not waking up so dry and congested.… Read more

I was vaccinated as soon as it was available, I was boosted for each variant. I got COVID in Jan 2020, I got each variant. So I ended up getting it 5 times. I am beginning to think I may be one of those who the vaccine doesn’t work for. I did take the RSV, pneumonia, and flu shot this fall.

I developed pulmonary fibrosis after the first COVID-19.

I contacted COVID in December of 2019. My primary care treated me for what he thought was bronchitis, then pneumonia. In March of 2020 I was referred to a pulmonologist who diagnosed COVID.

The COVID cough continued for several months until I was sent for a HRCT. I also had the ground glass and pulmonary fibrosis. Six months later I had…

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I am also relatively new to oxygen. I was diagnosed recently with pulmonary fibrosis with emphysema CPFE. I am on oxygen 24hrs a day. I tried oxygen bottles which were very cumbersome. I switched to a portable concentrator. I have a bad back so I purchased a tiny luggage rack and attached the concentrator with Velcro.

My problem is my oxygen…

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