[Joy Hoffmann]

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.

.

 

[Joy Hoffmann]

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 was disturbing.I was immediately sent to  pulmonologist and was diagnosed wit IPF,.That Velcro sound in the lungs.My sister died from this disease in 2014 before OFEV. So I feel very fortunate .I am 83 years old But I am fortunate to have really good genes.I do eat small portions many times a day.I also drink plenty of water.My BP which has always been high is at the normal range now.I tolerate the OFEV very well. And I have last 18 pounds which I needed to do.So all in all my life is pretty good.Thank you all for your  comments. Always helps to know we are not alone.I live on the East coast which has very  humid weather.The biggest change I notice is a low tolerance for heat.I visit my family out West and the dry air is more comfortable.I have been married twice and gone through Alzheimer’s with my first husband and cancer with my second husband so Life us not easy for many and I feel lucky to have had a long life.I have 3 children 11 grandchildren and 8 great grandchildren. My sadness is for those who suffer from IPF and are so young.My thoughts are with you  .Try to keep busy and positive and keep exercising as much as possible.

[Joy Hoffmann]

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

[Joy Hoffmann]

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

any advice on how to cope with IPF?

[Joy Hoffmann]

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 with PF

I really would like to know how long patients have had it

it would be helpful to date comments

Are there patients out there who have just shortness of breath?

I had acid reflux quite a bit but am doing a couple of exercises that have alleviated it

so feeling much better

thank you all for your honesty and information

 

[Joy Hoffmann]

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

I have both

IPF and PH

 

[Joy Hoffmann]

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 can say is keep busy , eat  healthy and try to stay positive. Hope is on the way , it is said , possibly in 2023.

 

[Joy Hoffmann]

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

[Joy Hoffmann]

That is acid reflux probably.

It is very common with PF .

Talk to your Dr about it.