denise anton
Forum Replies Created
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Dear Bob, I can so relate to your frustration. I got ver tired hearing “everyone is different” not helpful when you are trying to assess where you are. You are one the right track. Ask lots of questions, research, and mainly, follow how you are feeling. I have had IPF for about 3 yrs, diagnosed under 2 yrs ago. I find Ofev has helped me a lot. Couldn’t tolerate the 150mg, so I am on 100mg. This forum is great for info! Sorry you have the disease. Stay strong, positive, & in prayer!
denise -
Sad, challenging, frightening, & fatal.
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Yes
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Sorry about your diagnosis Pam. I too have asked the question, but can not get anyone to provide realistic statistics, which must exist somewhere. “Everyone is different”is true, but there must be some information that will help those with IPF evaluate how to plan their future. Rather than discourage me, it would help me feel informed and therefore empowered. Clinical trial reports from many countries currently use 3-5 yrs in their reports. If 5-9 yrs with the two fibrotic drugs is a better figure, why is it not published?
Stay strong, optimistic, and positive! -
thank you both!!
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I just spent the morning chatting with an Ofev nurse to find out about headaches. Same response “everyone has different reactions” It is somewhat reassuring to see I am not alone, though I am sorry for all of us! Not sure if it is about sinus, food, other meds., or combo. I was doing well with 100mgs, after 150mgs did me in. New to IPF at 65.
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Beautifully stated! Thank you and may God bless us all. Find strength in His Divine Mercy! ????????❤️????????
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AMEN Paul. May God bless us all!
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Dear Russell,
I have the same diagnosis timeline. I have extreme retching problems w Ofev, but don’t do well w pills, so I have not switched to Esp’t.. I will keep you in my prayers. It is a hard trial we have, but we must persevere & trust in Our Lord’s great love and care. Stay strong and brave!
your IPF sister, denise