Cindy Sears

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?

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.

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]

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.

@Steve Dragoo.  Hi Steve good to see you on here again. I have quietly followed you since I was diagnosed in 2019.  You had a lot of interesting information.  My symptom is coughing and I have noticed it has increased lately. Of the four meds you listed which one would you start with?  Do you know which one had the biggest results on cough?  I…[Read more]

Hi Thom, Thank You for sharing your experience with OFEV.  Glad to know the liver enzymes can come back down and that I may get to go back on OFEV. You have lessened my worries.  I pray your CT scan comes back better/stable. Glad to hear you are feeling fine and I am glad you are here also!  Happy New Year!  Cindy

Hi Charlene, Hope you had a great Christmas Holiday and Happy New Year.  I see a Dr at U of M in Michigan. So I am  not to far from you.  Not sure what the Dr. is thinking yet.  I am supposed to call when my rash clears.  I really do not want to go off OFEV so hopefully I will get to go back on it.