Pulmonary Fibrosis News Forums | Joy Hoffmann | Activity https://pulmonaryfibrosisnews.com/forums/members/joye/activity/ Activity feed for Joy Hoffmann. Thu, 23 Apr 2026 13:45:40 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 d5d38ca9ddc9309417e3dea57ffb9a7e Joy replied to the discussion Starting Ofev in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-ofev/#post-30188 Thu, 14 Oct 2021 00:54:57 -0500 Reply to Starting Ofev

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.

.

 

]]> dbc90363b215445b1f8fae5b470a3729 Joy replied to the discussion Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-users-can-safely-take-ofev-on-a-long-term-basis/#post-29881 Wed, 08 Sep 2021 22:00:29 -0500 Reply to Ofev Users can Safely take Ofev on a Long Term Basis

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… Read more

]]> 2d482f73d06802dbc4f825498f186633 Joy posted an update: Had a bad diarrhea flare up.did not eat enough and took […] https://pulmonaryfibrosisnews.com/forums/activity/p/28161/ Tue, 06 Jul 2021 20:23:22 -0500 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… Read more

]]> 1 5f5a0ed02d06d3f315af50572001bd54 Joy replied to the discussion High Humidity Can Be A Hurdle for Patients with PF in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/high-humidity-can-be-a-hurdle-for-patients-with-pf/#post-29115 Tue, 06 Jul 2021 20:00:50 -0500 Reply to High Humidity Can Be A Hurdle for Patients with PF

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

]]> 2e35b255c1ce85a2bdb3de9995ad6be2 Joy replied to the discussion High Humidity Can Be A Hurdle for Patients with PF in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/high-humidity-can-be-a-hurdle-for-patients-with-pf/#post-29114 Tue, 06 Jul 2021 19:57:40 -0500 Reply to High Humidity Can Be A Hurdle for Patients with PF

Will be going to,Utah for 19 days and very concerned re heat and high altitude

any advice on how to cope with IPF?

]]> 3a4687d2f506d792512c19b708bfc6df Joy replied to the discussion Living with IPF vs When Diagnosed in the forum PF Life: 50+ https://pulmonaryfibrosisnews.com/forums/forums/topic/living-with-ipf-vs-when-diagnosed/#post-28098 Sat, 17 Apr 2021 20:21:28 -0500 Reply to Living with IPF vs When Diagnosed

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… Read more

]]> d99394cf684db4611134bdaeb6893bcc Joy replied to the discussion Burning feeling in chest in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/burning-feeling-in-chest/#post-27871 Thu, 25 Mar 2021 22:01:00 -0500 Reply to Burning feeling in chest

That is acid reflux probably.

It is very common with PF .

Talk to your Dr about it.

 

]]> ff39da066fe8cbd8707b8bbf01970070 Joy replied to the discussion New to this forum and kind of confused in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/new-to-this-forum-and-kind-of-confused/#post-27870 Thu, 25 Mar 2021 21:14:51 -0500 Reply to New to this forum and kind of confused

So who has Pulmonary hypertension!
I feel like death is just around the corner.

I have both

IPF and PH

 

]]> ae55d5672d2c3018c054142673c242c1 Joy posted an update: Fear https://pulmonaryfibrosisnews.com/forums/activity/p/26329/ Thu, 25 Mar 2021 19:56:58 -0500 Fear

]]> 0 0acf67dc64674f29163643829ae0ea2f Joy posted an update: So far so good https://pulmonaryfibrosisnews.com/forums/activity/p/25263/ Tue, 02 Feb 2021 20:30:33 -0600 So far so good

]]> 1 0a4599af9eace013f5f5cccba6974695 Joy replied to the discussion Afraid of the unknown in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/afraid-of-the-unknown/#post-25965 Thu, 29 Oct 2020 22:22:44 -0500 Reply to Afraid of the unknown

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… Read more

]]> 2170ace1cc142e3893622e29f5653993 Joy replied to the discussion EGCG Green Tea Extract in the forum Clinical Trials https://pulmonaryfibrosisnews.com/forums/forums/topic/egcg-green-tea-extract/#post-25790 Mon, 12 Oct 2020 21:04:48 -0500 Reply to EGCG Green Tea Extract

I have been taking 2 green tea extracts for about 3 months. Not sure if it helps or not.

]]> 87a7c15d589942e1e2379b1b337360bd Joy posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/20693/#acomment-22865 Mon, 12 Oct 2020 20:28:44 -0500 Does Charlene have a different forum…?
If so I should say thank you Mark

In reply to - Joy became a registered member ]]> 4dcb6ac7081fbdbc97e41493750e96bc Joy posted an update: First of all. Thank all you who contribute to […] https://pulmonaryfibrosisnews.com/forums/activity/p/22864/ Mon, 12 Oct 2020 20:26:33 -0500 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… Read more

]]> 1 073982d324ac58d0c14bb77718ff5ab4 Joy posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/20693/#acomment-20696 Fri, 19 Jun 2020 22:59:27 -0500 Thank you Mark….

In reply to - Joy became a registered member ]]> 74c2c7169e8654eb5277d8d68b8fe1e6 Joy posted an update: Will have breathe test on July 6. Hopefully No progression https://pulmonaryfibrosisnews.com/forums/activity/p/20695/ Fri, 19 Jun 2020 22:57:12 -0500 Will have breathe test on July 6.
Hopefully No progression

]]> 1 774f771135bda9fae53b5ea6cfab1adb Joy became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/20693/ Fri, 19 Jun 2020 22:35:56 -0500 4