[Dub Karriker]

Hi Laurie,

Having lost two close friends to IPF in fairly short order I was shocked to be diagnosed. That was three years ago. I tried OFEV and found the side effects for me to be unbearable (blood pressure spikes, crushing headaches). My pulmonologist wanted to switch me to Esbriet but I had noticed no advance of the disease. We agreed to wait to see if or when the decline would begin. It hasn’t. I did not regularly exercise before diagnosis but began shortly thereafter. I am very healthy otherwise. Regular exercise, walking, and particularly building and maintaining muscle mass as I age (I’m 68) has helped in many ways. I still run out of breath with aerobic exercise and just climbing stairs. I use Boost oxygen when I need a quick pick me up of my SPO2 which is similar to the numbers you posted. Don’t let the stats you see online discourage you. Most of those are outdated and unless there are other underlying health issues actual life span with IPF has increased significantly. As Steve mentioned, I find my Christian faith a great source of peace and strength. It’s good to be part of a supportive, praying community. You’re not alone.

Take care and I’ll be praying for you.

Dub

[Dub Karriker]

Hi Pam. Having lost two friends to IPF at around 2.5 years after their diagnosis I was shocked and dismayed when I learned of my diagnosis on MyChart. I am now three years out (with a different pulmonologist) and approaching 68 years old. The disease has barely advanced at all in that time and I am still not on oxygen. I initially was on OFEV for a year but the side effects made life intolerable for me. I did not start Esbriet and two years later I’m still good. Exercise and keeping up muscle mass as I age has helped a great deal. I use Boost Oxygen when I need a little extra to recover after exercise, walking uphill or up steps, etc. Overall my quality of life is excellent. Some people have a longer form of the disease than others. Faith in God, prayer, exercise, a supportive community, and a positive attitude are all helpful to living a good life with IPF. Hope this helps. I’ll be praying for you.

[Dub Karriker]

Hi all. I’m new to the group and wanted to share my experience with OFEV.

• How long after your diagnosis of PF/IPF did you start taking Ofev? Within 5 months.
• When you started Ofev, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe? Yes. It is mild heading toward moderate.
• When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet? Yes. My doctor indicated that of the two OFEV was generally his preference as the first option, although the outcomes were similar. He said OFEV had a longer track record to measure against.
• How long have you been on Ofev? I was on it for one year. I stopped because of the side effects.
• Can you outline some side effects you have experience as a result of being on Ofev? I had gas, bloating, stomach pain, and diarrhea as expected but it was manageable. What I did not expect was that I developed crushing headaches that intensified as the day went on. At first I did not connect this with OFEV. My primary doctor and I tried to determine the cause and I began monitoring my blood pressure. When I had the headaches my BP was sky high. I was convinced OFEV was the cause. I started the day with normal BP, took OFEV with meals and watched it climb shortly thereafter. My pulmonologist and I agreed to discontinue OFEV as a result. My BP returned to normal and stayed there. The headaches stopped. The IPF did not progress measurably during that year.
• Do you have PF (with a known/suspected reason for the disease development) or IPF? I have IPF. I lost two close friends to this disease but there is no common link other than friendship.

I am blessed that my condition is stable and the IPF has not progressed much. I attribute that to faith in God, prayer, and divine intervention. I am almost 3 years from diagnosis and had noticed shortness of breath and fatigue for about a year prior. I waited until I was 65 and on Medicare to be tested due to financial concerns. The cost of OFEV was mostly covered by grants. I only paid for the first prescription. My pulmonologist set me up with a month of Esbriet after I stopped OFEV. I never started it because I am stable with only a small % of decline. If that changes I would consider trying Esbriet to slow the progression.