@joye
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Joy Hoffmann replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 1 year, 5 months ago
I am going from 150 mg to 100 mg because of gas and diarrhea Is the lower dosage just as effective as the higher dosage.
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Joy Hoffmann replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 1 year, 6 months ago
This web site is great for people to vent.
I was diagnosed with IPf in April of 2020. My doctor immediately prescribed OFEV. So Fay the diseases has not progressed. I walk everyday .Eat a high healthy diet.And the real positive is that I just started an 8 week PF rehab program. I have always been active and healthy so this shortness of breath…[Read more] -
Joy Hoffmann posted an update 1 year, 8 months ago
Had a bad diarrhea flare up.did not eat enough and took 150 OFEV pill.
Need food!
Thank you
All for the great advise re kinds of food to eat
Karen, ,your discussion comments are so helpful
Thank,you!
I feel in a way very fortunate because I have only had IPF for one year and I am 83
So I have had a long wonderful life.
So sad for those…[Read more] -
Joy Hoffmann replied to the topic High Humidity Can Be A Hurdle for Patients with PF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
Oh another thing
i had a horrible 8 hours of stomach cramps and diarrhea after taking 150 of OFEV on a rather empty stomach.
only had a hamburger and French toast that day
so everyone be sure you eat a good meal.
I usually eat more and then can tolerate the OFEV
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Joy Hoffmann replied to the topic High Humidity Can Be A Hurdle for Patients with PF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
Will be going to,Utah for 19 days and very concerned re heat and high altitude
any advice on how to cope with IPF?
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Joy Hoffmann replied to the topic Living with IPF vs When Diagnosed in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 11 months ago
April 2021
I know all patients progress with this disease and we are all progressing at different rates.
I guess in a way I am fortunate because I am 83 and was diagnosed one year ago
I have been on OFEV all that time
I have only shortness of breath on stairs and doing housework
I walk 3 miles each day
I am sad for those who are so young w…[Read more]
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Joy Hoffmann replied to the topic Burning feeling in chest in the forum Using Our Forums 2 years ago
That is acid reflux probably.
It is very common with PF .
Talk to your Dr about it.
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Joy Hoffmann replied to the topic New to this forum and kind of confused in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago
So who has Pulmonary hypertension!
I feel like death is just around the corner.I have both
IPF and PH
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Joy Hoffmann posted an update 2 years ago
Fear
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Joy Hoffmann posted an update 2 years, 1 month ago
So far so good
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Joy Hoffmann replied to the topic Afraid of the unknown in the forum Diagnosis Information and General Questions 2 years, 5 months ago
I find staying positive and calm helps so much.
I will have my first breathing test since being diagnosed in March and have been on OLEV since that time with no side effects.
My tests are at the end of Nov and I am very nervous about it.I am a young 82 year old so pretty much have lived a wonderful long and healthy life. At this point all I c…[Read more] -
Joy Hoffmann replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 2 years, 5 months ago
I have been taking 2 green tea extracts for about 3 months. Not sure if it helps or not.
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Joy Hoffmann posted a new activity comment 2 years, 5 months ago
Does Charlene have a different forum…?
If so I should say thank you Mark -
Joy Hoffmann posted an update 2 years, 5 months ago
First of all. Thank all you who contribute to this discussion.
What in uplifting experience.
I am very fortunate that I experience only shortness of breathe and not all the other symptoms that are discussed here.
I am 82.. very healthy until this IPF reared it’s ugly head.
Have been on OLEV since my March 2020 diagnosis with not ill effects.
I w…[Read more] -
Joy Hoffmann posted a new activity comment 2 years, 9 months ago
Thank you Mark….
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Joy Hoffmann posted an update 2 years, 9 months ago
Will have breathe test on July 6.
Hopefully No progression -
Joy Hoffmann became a registered member 2 years, 9 months ago
Hi Joy! I’m happy to hear you have had a long and fulfilling life so far, full of family and health! Was your sister diagnosed with PF as well? There are some interesting conversations going on in here about familial linked PF, have you seen them?
One more note, it looks like you posted this as a status update, so the forum community probably…[Read more]