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

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… Read more

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… Read more

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….

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… Read more

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… Read more

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….

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

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… Read more

Good luck Marianne….keep us posted

Thanks Mark….we will see how it unfolds.

Update!  So far I seem to be tolerating the Ofev pretty good with minimal side effects after one week .  I know it is still premature,  but if it stays like this & does what it is suppose to,  I am “all in”!  Next, I have to go for left & right heart catheterization next week to see if my heart has any signs of narrowing vessels or pulmonary… Read more

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

Thank you Marianne…..

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…..

My Insurance just approved my treatment with Ofev,  Will start taking Ofev on May 28th.  I know it needs to be taken 12 hours apart with a meal, so my question is….I won’t have an issue with the morning dose being taken with breakfast lets say 8:00ish, but how do you compensate the evening dose with a meal 12 hours later at 8:00pm?  Do you… Read more

Suggestions please to help me to make my life more manageable….

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… Read more

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… Read more

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… Read more

Thanks Andy….I will look into it

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… Read more

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

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….

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….

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… Read more

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

Thanks for accepting me to PF News forum. I was recently diagnosed with IPF & have 2 small honeycomb formations that are now showing in my lungs. My Dr. wants to start me on Esbriet, to slow the progression of the fibrosis & I am trying to weigh out all the pros & cons. I know this medication will drastically change my lifestyle & I am… Read more