[John L]

Hi Cindy…welcome!  I have been on Ofev about 2 months now.  I struggled also trying to find the right food to eat when taking my Ofev.    I believe everyone is a little different but for me I try to eat something that will absorb the medication both in the morning & evening.  For breakfast, I can get by with an english muffin & hard boiled egg or a bowl of cereal with a banana.  See what works best for you as long as the food will absorb the meds.  Main thing I found is greasy & processed food upsets my stomach after I take the Ofev.  Good luck with your journey….I learned so much on this site from all of you.  Charlene & Mark have been very helpful….best regards,  John

[John L]

Marianne…Yes, I am retired.  I am on Medicare, & BC & BS as a secondary, also get a pension & I was approved.  I was surprised because you have to tell them your complete income when applying.  My co-pay was what they covered.  It’s worth a shot to call them & speak to one of their representatives……I know there are other places too that offer support?  Someone on here should know the names & contact numbers….You can inquire on a forum to get the info you may need….good luck to you!

[John L]

Thanks Charlene….still doing ok with the Ofev & side effects are minimal.  Choosing the right food to eat has been somewhat of an adjustment & a learning experience for me by trial & error.  When something upsets my stomach, I make a note not to eat that again with the meds….only once with eating fried chicken it left me feeling some stomach discomfort but overall hasn’t been bad.  They say greasy & spicy food is bad with Ofev!   No diarrhea as of yet!  Will keep you posted with my post blood-work……..more will be revealed

[John L]

Good morning….Being relatively new to this, regarding blood work to check liver functions, I can only share my experience thus far.   My guess is each Doctor might have a slight different approach monitoring your blood.  My Pulmonologist had me take a blood test prior to even starting the Ofev.  Then wants me to take 1 test per month for 6 months, then, 1 every 3 months after that….I will be taking my first post blood test the end of this month….They do need to monitor how the Ofev is effecting the liver closely at first to see if your liver can tolerate it……I have read where some people had to stop taking the Ofev due to bad liver functions after being on it….fingers crossed!   Hope this helps

[John L]

I know there are other Agencies besides Healthwell Foundation that offer support too!  Healthwell was suggested to me by Open Doors & by my Specialty Pharmacy….

[John L]

Healthwell Foundation  # 800-675-8416    This place picked up my co-pay for the Ofev.   They have funds to assist with meds.  I also have Medicare & BC&BS as a Secondary Insurance.  I didn’t think I would qualify & they approved me to pay the co-payments.   Worth a shot….

[John L]

Good luck to you with the rehab @Marianne…..keep on keeping on

[John L]

Some information I was told by a Clinical Educator for Ofev on Friday which was not easy to swallow is that…it takes “10” years for a new drug being researched for IPF to go from studying with mice to humans!    Anyone else have any info pertaining to this?  Anyone know of anything new that might be coming out to treat IPF in the next couple of years?  He couldn’t answer that?

[John L]

Good luck Marianne….keep us posted

[John L]

Thanks Mark….we will see how it unfolds.

[John L]

Good luck Marianne…Hope they can help find a way to get you the Ofev….

[John L]

Thank you Marianne…..

[John L]

Thank you both Charlene & Mark for your advice & suggestions & thank you both for all that you do here with these forums.  It has been a learning experience for me & you’ve both been very helpful.  I will keep you posted as I go along…..

[John L]

Just coming to terms with this IPF diagnosis & I am already seeing how my family & friends are responding to my daily struggles.  I really don’t think they fully comprehend the effect this is having on me physically, mentally, & spiritually.  I get the impression that because I somewhat might look good on the outside, that everything is ok with me?  Well, “news flash”, everything is not ok!  Not looking for any sympathy, but when in conversation, I try to explain how I’m feeling, I find they almost automatically start talking about how they sometimes feel like that too, or just seem to minimize my feelings.  I appreciate this forum to at least have a place to vent with people that can relate & identify with what I am going through.  I don’t want to push people away in my life that I love (family & friends) but sometimes I feel like closing down to them & keeping my feelings to myself.   Any thoughts?

[John L]

Thanks Mark…I have been on an emotional roller coaster since this diagnosis earlier this month. Been glued to the internet. Trying to manage my acid reflux. Deciding between Esbriet or Ofev? What to eat, or not to eat? Learning as much as I can is also draining at times & wearing me down. Grateful to this forum for some identification with others that have been dealing with this horrible disease & have been coping much longer then me. You guys give me hope! In time, i’m hoping to make the needed adjustments to bring more balance into my life. Keep doing what you’re doing Mark. You are an inspiration!

[John L]

Thanks Andy….I will look into it

[John L]

My latest inquiry is I notice I’ve been having some burning in my lungs when I breathe for the last couple of weeks now. My next appt. with my Pulmonologist is later this month. Anyone have any info on this or how to relieve the burning sensation? Been doing google search with little remedies. Thanks….

[John L]

Is there a brand or preference of the ginger tea?   thanks….

[John L]

Thanks Rob for the feedback….I am seeing my Pumonologist this Monday to discuss treatment plan. Initially, they said Esbriet but I am leaning towards Ofev for a few reasons but mainly because of the sub sensitivity issue with Esbriet. I live in Florida & it’s sunny here 9 out of 10 days. I appreciate your advice to start meds as soon as I can. It seems to be the best defense to slowing the progression. Thanks again….

[John L]

Thanks Connie for your feedback. I have to say it’s good to hear some positive feedback from someone taking Esbriet. Most that I read is nothing but a horror show. I guess some tolerate it better then others. I will see my Dr. on the 22nd to further discuss my treatment plan. She thinks now is a good time to start & I am trying to come to that place of acceptance. Wish you all the best. Thank you….

[John L]

Thanks Charlene…I have been reading many of the forums. Good luck to you & thank you for all you do here……..

[John L]

Wishing you the best with the meds Kathy. I am hearing similar stories as yours with the side effects. I’m still on the fence with making my decision. More will be revealed….

[John L]

I feel the same way you do Susan. i presently have a pretty active lifestyle. I know that will change in time, but the side effects of Esbriet are horrible. For one, you can’t be in the sun more then 10 minutes. I live in Florida! It’s sunny here 9 out of 10 days. I love the beach! Also, I ride a motorcycle & this medication with all the side effects will bring that to an end. I am not on oxygen yet & do get winded pretty easily but feel I have some time before I put a stop to the things I love. Wishing you the best Susan. It sounds beautiful where you live. Enjoy each day to the fullest for tomorrow is not promised to anyone. What is the time difference of us?

[John L]

Thank you Jean….I will try to do the next right thing.  Still digesting the diagnosis.