I also feel exercise is the key to mainaining the lungs stable. I walk briskly 3-4 miles wach day. I was diagnosed in Oct, 2020 and now taking OFEV 150 mg twice a day. My O2 level is around 99 all day. I am being told by my doctor for transplant evaluation, but have declined each time. I will be 70 next month and will try to live out the… Read more

Hi Sally,

I am in the same clinical trial by United Therapeutics at week 28. The only side effects I feel are excessive coughing and some dizziness right after inhaling the medicne. I feel I can exercise more since I started the trial last December. The spiro numbers show little or no change. My O2 level is high at 99% with no lack of energy… Read more

Hello Rumana,

I am so sorry to hear about your mom’s condition. I am also from Bangladesh and now live in the US since Jan, 1978. I am almost 70, was diagnosed almost 3 years ago and although my CT scans every 6 months show some progression, I am fortunate that I am very stable and work full time. I have no desire to quit anytime soon. I am… Read more

Hi Emily,

I am into the 3rd month and you are right that it saps all your energy especially in the morning. The coughing becomes violent and continuous. It gets better during the day and into the evening. I am on 200mg OFEV daily and not  sure if I want to increase to 300mg. My O2 saturation is in the high 90s but PFT keeps showing… Read more

Pete,

Every individual reacts to a medicine differently. In my case, the coughing goes up quite a bit after inhaling the medicine. It lasts at least 30-45 minutes. It also caused my blood platelets to go down which worries me. On the postive side, I feel I can exercise more resulting in less fatigue. The primary target is to increase FVC, but… Read more

The same company has applied to FDA for Tyvaso to be treated for IPF under a phase III trial called Teton 3. I am participating in it since December. The medicine is in liquid form and has be inhaled 4 times a day. I can’t tell if I have seen any benefits, but side effects are noticeable. I am tolerating it so far. Hope it helps.

 

John,

Thanks for sharing your jouney of 11 years and counting. Your story brings hope to those of us in despair and searching for an answer. Fibrogen has a Phase III trial ongoing. Are you in this trial? I am participitaing in another one called Teton 3 from United Therapeutics. There is also another Phase III trial from BI called Fibroneer.… Read more

I turned 69 last month and was diagnosed 2 years ago during a routine annual exam. I had no symptoms but have developed some since then e.g. coughing, fatigue. My doctor feels my Hiatal Hernia which causes acid reflux contributed to aspiration and eventual scarring around the periheries of my lungs. Lately, I have been seeing a pulmonologist… Read more

I was diagnosed 2 years ago (Oct 2020). Other than a dry cough in the morning, I have had no symptoms. I remain active phycially and take a brisk walk each day for about 45 minutes. I have been taking OFEV (100 mg twice a day) for the last 8 months. I was told I had 3-5 years to live. I am trying to enroll in a phase 3 trial with a doctor… Read more

I started OFEV in late January (2 100 mg capsules a day). After 30 days, I went to test my liver functions. Altought I had no GI issues, my liver enzymes shot by 50% in 30 days. I immediately cut down to 1 a day and will test again soon. I am concerned about the medicine damaging my liver. If the enzymes come down to a number within the range,… Read more

This is interesting that there might be a connection between statin drugs and IPF. I have a friend who is taking 10mg Crestor for 16 years and with no effects. My doctor prescribed 10mg Crestor 15 months ago but by then, my IPF was already detected. I was diagnosed in Oct 2020, I started OFEV (100mg) 2 weeks ago. I am having serious issues… Read more

I started on 100 mg Ofev pills yesterday, today is the 2nd day. I have not experienced anything unusual yet. I made sure I had a good breakfast, cottage cheese+ veggie sausage on whole wheat bread + tea. I had normal food for lunch and dinner. No side effects yet. I wanted to have a normal eating habit since I work full time and want to blend… Read more

Lawrence, you inspire me to be even more active. I am 68 and try to be active throughout the day. I play tennis 1-2 times a week and walk 10k steps daily. I was diagnosed a year ago. I will know soon if my condition was worsened in which case I will start taking medicine. So far, I have resisted the idea due to side effects which are well known.… Read more

Howdy Jim Nox,

Sorry to hear your condition is now in an advanced stage. When were first diagnosed with this terrible disease which has no known cause or cure? You certainly have the right attitude in staying positive and sharing your thoughts on this board. I thank you for your uplifting words. I saw my doctor again yesterday. He ordered… Read more

I live in the Houston area. Can you share the name of the Clinic and contact information? I don’t have any idea if my insurance will pay for the treatment. How much does it cost monthly? Does VA cover your expenses?
Thanks.

Kathryn,
I am so sorry for your loss. As humans, we can only do much and feel powerless after that. Please do not blame yourself. There will be a time for all of us to bid farewell to Earth. I just hope it’s in my sleep and relatively pain free.
God Bless.

I also believe herbs can make a difference in your breathing ability. I called Wei Institute right after I was diagnosed and was about to try their product. But I could not justify the cost ($3000 for 3 month supply). I started running and taking EGCG extract, green tea and other herbs such as ginger, turmeric and cinnamon. My recent… Read more

I started taking EGCG (350 mg capsules) right after I was diagnosed in late October. I also drink green teat each day. I read the same research report and felt I could not lose anything by taking the extract. I also changed my diet completely with anti-inflammation items replacing anything that causes inflammation. I have not lost weight in… Read more

I can’t agree that staying away from the Internet is always a good thing. I picked up so much valuable information by deep diving on the Internet. When my doctor diagnosed me 5 months ago from an X-Ray and pronounced that I had 3-5 years to live, it was a debilitating feeling. I started my own research and after applying many of the ideas I… Read more

Hello James,

I live in Houston, TX and joined a group in Dallas area called PF Warriors. They hold monthly meetings and have great presenters. I attended the last 2 and got lots of new information on Oxygen therapy and other topics. Look them up on Google. I am also looking for a second opinion and someone with established authority in this… Read more

Hi everyone,

I believe the 3-5 years estimate given by a pulmonologist is a disservice to most patients. When I was diagnosed on October, 2020 and told I had 3-5 left to live, it triggered a series of reactions inside me which were mostly harmful. Fortunately for me, I had a supportive family who refused to accept this and pointed to my… Read more

To Pete and all those who contribute,

I have gained so much from your shared experiences. I feel I belong to a community who are caring, selfless and pulling for one another. I am in early stages and the journey ahead will be long, I hope. And from what I have learned here, I will benefit in easing my burden. I want to quote the words of… Read more

I am a 67 year old male and was diagnosed 4 months ago. I have resisted my doctor’s advice to start taking Ofev or Esbriet in recent weeks. He thinks I should choose one of the 2 to avoid an acute progression since it’s in early stages now. I plan to see another doctor at Baylor College of Medicine before I do that. I am worried about the… Read more

I read all your posts with interest since I am also dabbling with the idea of experimenting with Wei Labs products. I was diagnosed with early stage IPF almost by accident in late October during a routine physical. I thought I was healthy since I lead an active lifestyle with regular jogging, brisk walks and tennis. When I was refereed to… Read more