Members - Pulmonary Fibrosis News Forums

Mack

Member

June 20, 2025 at 2:53 pm in reply to: Golf

I have stopped playing golf because mt breathing has gotten worse almost overnight. Do you guys that are still playing wear your oxygen machine while swinging your club ?

Thanks,

Mack

Member

March 28, 2025 at 2:25 pm in reply to: Let’s talk about supplemental oxygen

I’m using Boost Oxygen when I play golf and it seems to help so far.

Mack

Member

March 28, 2025 at 2:22 pm in reply to: Boehringer Ingelheim 1015550 fibroneer study

I am very interested in this product and hope it is available soon. Please let me know if you have any information, please.

Thanks,

Mack

Member

May 14, 2024 at 2:23 pm in reply to: How quickly can pulmonary fibrosis progress?

I was diagnosed in May 2021 and have been on 150 does of Ofev twice a day since with all of the diarrhea problems. I have been fine and able to play golf 2-3 times a week, riding in a golf cart. I just started noticing I was a little out of breath on the practice tee warming up last week and then about 3 days later, just like you flipped on a light switch I couldn’t walk 20 feet without running out of breath and it seems to be getting worse every day. Has anyone else experienced this?

Mack

Member

November 16, 2023 at 2:51 pm in reply to: Ofev

Thanks for your reply !

Mack

Member

February 8, 2022 at 2:10 pm in reply to: Blood pressure

Thanks for the responses. I’m 78 and always had low blood pressure until diagnosed with PF in May 2021.

Mack

Member

September 14, 2021 at 5:37 pm in reply to: Split Ofev doseages

Thanks for your reply

I tried everything for my diarrhea and nothing worked at all.

Sorry but I don’t know what BMI is.

My new doctor at UT Southwest Medical In Dallas, Texas has me scheduled for a PFT in three months.

I weight 150 pounds so I don’t know if the 150mg was just too much or not. I just hope the the 100 works as well as the 150 did. Thanks again and i look for to your reply at you convenience.

Meredith

Mack

Member

September 14, 2021 at 4:50 pm in reply to: Split Ofev doseages

Dr. Salzberg

Do you think two of 100 is as effective as the 150 two times a day ?

My doctor reduced my does because of severe diaarhea. The 150 stopped my couch and helped my breathing. I hope the 100 will work as well.

Thanks

Mack

Member

April 25, 2025 at 2:21 pm in reply to: Boehringer Ingelheim 1015550 fibroneer study

Hy Steve, please keep us posted about any news you come across concerning this new drug.

Thanks,

Mack

Member

August 30, 2021 at 4:18 pm in reply to: Passing along what is working for me.

Hi Robert, I’ve been on Ofev 150 twice a day since 5/27/21 and have very serious diarrhea every day. So I’ve stopped taking since last Saturday and am back to normal. The Ofev stopped my cough and helped my breathing. I have tried the immodium gelcaps and they didn’t work either.

any other ireas ?

Mack

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