Connie Lum

[Connie Lum]

Hi Charlene,

I know exactly how you feel. I never wear a mask in public if just going around town but I should change that habit. I am leaving for a 15 day cruise to Hawaii. I am taking a N95 disposable mask but not sure how often I will wear it. What are your recommendations and those of others reading this? Will you wear it every time you leave your cabin? I guess I should just get over what I look like and how others see me. I continue to be a symptomatic and would like to stay that way for awhile. Love these forums. Thank you. Also this corona virus is frightening.

[Connie Lum]

Hi,

I am on Esbriet. Almost a year now. I have noticed an increase in hair loss, especially in the shower. My hairdresser says she doesn’t think I have more hair loss but I have a lot of hair to begin with. I know this directed at Ofev but I think there is a crossover of side effects between the two drugs. This could be difficult to blame hair loss as a side effect because it also comes with aging and other things. Of all the other side effects, this is the least worrisome.  Have a good day everyone and try to enjoy every second of it.?

[Connie Lum]

Hi Katie- I think a journal is a wonderful idea. I’ve tried to write a journal off and on for years. But had difficulty keeping it up. It would be interesting to see how my journey goes. I feel like I don’t even have IPF. Which is a good thing and to chronicle my journey. A doodling space is a great idea. Perhaps some ideas of what to write for those who don’t have that special writing talent!

[Connie Lum]

Hi John,

I was diagnosed in October 2018. I chose Esbriet because I was concerned about the GI issues with Ofvef. I am currently at the max dose and have no issues at this time. I did in the beginning when I tried the max dose so backed off for about a month with a smaller dose and then tried again and I have not had any issues. I live in California and recently went on a trip to Hawaii and was fine. There are times when I take it with minimal food but still have not had side effects. Sometimes some heartburn but I took Tums which took care of the problem. Also take omeprazole daily. My brothers also have IPF one had a lung transplant and is doing great. The other did not tolerate either med and currently chose not to take any. I have no symptoms, I was tested because of my brother’s lung transplant. Both brothers are younger than me. I currently walk 5 miles a day. Trying to keep myself as healthy as possible. I think you should at least try to take the meds and if the side effects are too much for you then stop and enjoy your life. Good luck!

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