Denny

I am confused. I asked my specialty pharmacy if being on Ofev meant I was immunosuppressed and the pharmacist said no that Ofev does not make me immunosuppressed.  Yet all of you seem to think we are.  Did anyone else ask their pharmacy?

I am so very sorry for your loss. Hold your memories close so that you have them when you need them the most. IPF is an insidious disease and one that many family members and friends struggle to understand. As a fellow IPF sufferer, I do understand the heartbreak that comes along with it.

Take care of yourself.

So sorry for your loss. Prayers for peace and comfort for the family.

Wendy, I had a hard time after my second covid.  I had a cough and lower oxygen levels and fever.  I did gain most of it back but took 2 weeks!  Praying for recovery for you.

Cindy

Does anyone know if the study of Laser that Dr Hall was invited to participate in is still going on?

Hi Rob, Are you in a trial?  My doctor just talked to me about getting into a trial with NAC.

Cindy

I have burning in my stomach often and I attribute it to gas pains from the Ofev.  (Ofev gives me a lot of gas.) I try to not take the pills to close together( 10 to 12 hrs apart with protein) and I find keeping something in my stomach helps. I am not a Dr, this is just what has worked for me.

Prayers for you and your dad as you go through this difficult time.  Vishal you cared very well for your father and did the best you could with what you knew and your father knows that also. The love shows up in your comments here.  This is a hard disease and I pray peace and comfort for you.

I was also informed of this news.I am hoping we will get more details as to why in the coming days.

I had been in this trial since May 2019. Yesterday trial participants were notified that the trial has been cancelled effective immediately. Not much yet in the way of details but hopefully we will get some explanation in the coming days as to why.

Hi Mark,  I was put on Ofev right away when diagnosed in July of 2019 with mild to moderate IPF.  Because I am not 65 and not on Medicare but have a private insurance from work I was eligible for help.  Insurance covered most and what insurance didn’t cover this assistance program did so I have not had to pay any copay yet.  However I turn 65 in…[Read more]

Hi Susan I see you on here often. I feel like I know you a little!  Yes postnasal drip can cause phlegm and cough, of course I am not a Dr. just a retired nurse. Praying for strength and good health for you.

Sorry typo age is 64.

Hi James, Your  case sounds just like mine. I was diagnosed with IPF in 2019.  I am 54 only on 02 at night and if I want to exert myself .  I cough first thing in the morning a lot clearing a large amount of phlegm. About 20 to 30 mins. Then I still cough throughout the day and move phlegm but not as much as in the morning .  My Dr says I have a l…[Read more]

After about 6 months on OFEV, I started experiencing some gum line redness, swelling and pain. My regular dentist recommended I see a periodontist, which I did. His office did a very “deep” cleaning and then recommended that I see my regular dentist every six months and the periodontist every six months, so having my teeth cleaned every three…[Read more]

I think over time my abd pains decreased.  I think diet is important.  To much junk food sets off my stomach.  Think of high fiber foods and proteins.  Hope this helps you.  Give it some time.

I spoke to the company and she said Phase 3 will be starting soon. It is listed on the government trial site but not recruiting yet. Hopefully by the end of the year. I plan to try to get in this one.

One additional thing is that I do a series of stretches before I even get out of bed each morning. I am still on my nighttime O2 while doing it. I do eight leg raises on each side, I do an exercise where I lift my knees, cross them over each other and rock from side to side, which loosens up my hips. I do a cross over leg exercise where I stay…[Read more]

Charlene, I do know what you are saying. Can be so hard to exercise but I always think back to when my pulmonologist told me that if he had to choose (and he didn’t say he wanted to), he would choose me continuing to exercise over taking Esbriet as he felt it was that important.

I work out with a personal trainer twice a week, using FaceTime. I…[Read more]