Sorry Ofev didn’t work for you. I’ve been on it for 14 months with no issues. I’ll get a CT scan and do the PFTs in February. I’m eager to see anything is there are any improvements.

I’ve been on Ofev for one year, originally on the 150 mg tablets twice a day. I found it hard to tolerate at that level with the stomach pain and diarrhea. A few months ago, my doctor switched me to the 100 mg tablets twice a day, which I’ve handled fine. I rarely get diarrhea b/c I eat a low-fiber diet, but I have up to 4 BMs a day. I always…

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My pulmonary doctor told me I’d have to be cancer-free for 5 years, which will be 2027, and that I’d have to lose 30 pounds before I could get on the registry for a transplant. I’m 61 and working on getting the weight off before 2027.

Hi Pamela – I have ILD secondary to Sjogren’s. I’m on Ofev and mycophenolate. It is my understanding that Ofev is intended to slow the progression of the scarring, and mycophenolate is intended to control the coughing and shortness of breath. Both drugs cause bowel issues for me, but my pulmonary doctor, at my request, lowered the Ofev dosage…

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I’ve been on Ofev for 7 months. I started at 150 twice a day, but after almost having a diarrhea accident at the dentist’s office, my doctor agreed to reduce me to 100 twice a day, and my diarrhea stopped. I’m also on an immunosuppressant that causes soft and frequent BMs, but I’m having fewer of those now that my Ofev dose has been reduced.…

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After a particularly bad episode recently with diarrhea (almost had an accident at the dentist’s office), my doctor is reducing my dosage from 150 to 100 twice a day, thank goodness. I find if I take the tablets less than 12 hours apart, my body reacts badly. I have to keep a handle on the time and make sure I take it when I’m supposed to and…

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I have PF and ILD. I started taking Ofev in August 2023, and in the fall of 2023, got the latest COVID, RSV, flu, pneumonia, and tetanus vaccines. I got the shingles vaccine a couple of years ago – that’s a one-and-done. Other than a sore upper arm, I’ve never had a negative reaction to a vaccine.

Hi Charlene – I had a few sessions recently with a therapist who specializes in palliative care for people with terminal diseases. It helped a lot and I do feel better mentally. I’ve stopped it for now but may start up in a month or two when my workload calms down again.

Hi, I have an Apple Watch Series 7, and it’s usually pretty accurate with the oxygen and heart rate readings at my doctors’ offices.

You need a new pulmonologist! Yours told you it’s up to God and to pray?! That’s it? That’s all he can do for you? What a load of crap. Praying is all fine and dandy, if you believe in it, but there are some amazing drugs on the market that could possibly help you and slow the progression of your PF. I have ILD with PF and am on CellCept &…

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I was diagnosed with autoimmune related lung disease in 2021. I’ve been on CellCept for a year and Ofev for 5 months. I deal with nausea and diarrhea frequently but I manage them as best I can with the hope they are doing what they’re intended to do – slow the progression of my disease. I’m scheduled to get PFTs and a CT next summer to see if…

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Coughing is a very common symptom with ILD and PF. I have ILD and cough a lot during the day. Some days are worse than others. I take a teaspoon of honey to keep the coughing to a minimum, especially at night. It usually works. The dry winter air makes the coughing worse, as do some foods that tend to aggravate my throat, such as salty foods.…

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I don’t know how Medicare works as I’m not old enough yet to be on it, but seems to me there should be an appeal process for their denial of your doctor-recommended therapies. I’d suggest asking your doctor to submit an appeal to Medicare. I don’t know why they’d deny therapies that your doctor has recommended. My commercial insurance…

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I’d be really careful about purchasing Ofev outside of the US. Personally, I would not do it. There is NO generic Ofev anywhere – that’s why it costs so much. Ofev patients and insurance companies are paying for all the R&D on the drug, and there’s a lengthy process for getting a generic drug approved and into the market. I understand that…

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Hi Blucoyo, welcome to the forum! I’m not sure how you would tell the difference between bronchitis cough and IPF cough. Do you have any other symptoms? I had pneumonia earlier this year, and was coughing quite a bit, and also had fever and chills, and my chest felt congested. I have a cough with my pulmonary fibrosis that comes and goes and…

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I avoid people who aren’t vaccinated whenever I can. I turned down an invite to my aunt’s house for Thanksgiving because my cousin and his girlfriend are not vaccinated. They’ve both had COVID but still refuse to get vaccinated. Their choice, and my choice to avoid them. My health comes first.

I use the Ayr Saline Nasal Mist several times a day to prevent nosebleeds. It works pretty well for me and keeps my nasal passages clear.

I got assistance through Open Door, which pays for all of it. I don’t pay anything. I work FT and am on my husband’s medical insurance. I was surprised I got it for free. I don’t know how long that will last. I was paying $85/month with my insurance.

I can’t eat acidic foods either. I hate it because I love oranges!

Hi Carol! I have Sjögren’s and Raynauds, and Interstitial Lung Disease (ILD), which is secondary to Sjogren’s. I’m on CellCept to reduce inflammation and Ofev to slow the progression of my lung scarring. I haven’t tried any supplements, enzymes, or other alternatives. My ILD is severe, so I was very eager to slow down the scarring if the meds…

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I would contact a pharmacist and ask. Also, I’ve had many UTIs and have always taken Bactrim, which, as far as I know, hasn’t caused any pulmonary problems for me. However, I haven’t used it since starting Ofev, so I don’t know how Bactrim (or any antibiotic) interacts with Ofev.

I use pure honey for my cough, a teaspoon at a time, at bedtime, or anytime I need to be on a long phone call. It helps a lot. There are honey products you can buy, too, that can help.

I’m 60 and on oxygen only for exercise though I may need to start using it for chores around the house as my breathlessness is increasing. I use a small…

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I work full-time, so I don’t have a lot of extra time for hobbies/interests. I read novels when I can and have the energy. I start every morning with the NY Times online word games, Spelling Bee, Connections, and Wordle. They are my “coffee.” They wake up my mind and get it rolling for the day.

My job keeps me pretty active mentally! I work full-time from home and feel blessed to still be able to work. Outside of work, I enjoy reading novels and socializing with my friends and family. Physically, I need to do more. I walk on my treadmill but have not been consistent. Now that the weather is cooler here, I plan to walk more with…

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That’s great that he’s started Ofev, Jayme. I wish him and you all the best. I also take my Ofev with plenty of protein and fat, and it helps a lot. Thanks for the book recommendation. I will check into it.

Some fingers give more accurate readings than others, in my experience. I take mine on my left-hand ring finger, and it almost always matches my Apple watch reading. @George Where did you buy the Vimeter?

I have severe ILD. I’ve been on Ofev for only 3 weeks and was told you don’t start seeing any results until 6-12 weeks. A pulmonary nurse told me I might have more energy on it, but I haven’t noticed any change yet. My side effects have been minimal and manageable. What’s the benefit of taking zinc?

I take Ofev with a 30-gram protein shake (Ensure or Pure Protein) and a slice of white toast with butter for breakfast. At dinner, I usually get my protein from seafood or meat. I swallow the pill halfway through my meal. It works as I’ve had very few side effects other than the occasional nausea, and then I just eat a few crackers, and it goes away.

Harold, what an inspiring story! Thanks for sharing. Wishing you many more healthy years.

There are over 200 types of ILD. The most common is idiopathic pulmonary fibrosis, which doesn’t have a known cause, followed by diseases caused by occupational exposure or connective tissue disorders. I find Healthline to be a reliable resource: Interstitial Lung Disease: Symptoms, Causes, Types (healthline.com). Let your pulmonary… Read more

I dreaded taking Ofev because of all the known terrible side effects, but I have been on it for four days and so far have had no side effects. I feel like I may be coughing slightly less since starting it. My ILD is very progressive and severe, and my pulmonary doc strongly encouraged me to get started on it as soon as insurance approved it.… Read more

I’m sorry about your experience with Ofev, Jackie. I just started taking it four days ago and, so far, have not had any side effects. I do take it with a lot of protein and limit my dairy intake, which I heard can help, and apparently is helping me. Fingers crossed this continues!

Thanks, Temple. My insurance company did finally approve Ofev, and I started it on August 5. So far, no side effects, which is a huge relief. My copay is only $85/month, which is quite manageable for me, so I haven’t applied for any financial assistance.

I finally started Ofev and am on day four. So far, no side effects. Based on the advice I read and heard beforehand, I have increased my protein intake, and I take my tablet halfway through my breakfast and dinner. I have reduced my dairy intake.

I just reread the OP’s message and realized she mentioned fatigue with CellCept. I’ve been on a higher dosage of it since fall 2022 and am just now experiencing intense fatigue. My doctor is wondering if I have anemia. I’m getting a CBC test done tomorrow.

Gabapentin made me loopy. I took it for foot neuropathy and then coughing. I find a teaspoon or two of honey quiets my cough pretty well for hours, especially when I sleep. I eat it straight off a spoon but I know some people stir it in tea.

I was officially diagnosed with ILD/PF a year ago at age 59, though my pulmonologist and rheumatologist have been following my lungs since my early 50s. I have an autoimmune disorder, Sjogrens, which they think caused the ILD/PF. I’m on Cellcept and about to start OFEV. I’m currently doing pulmonary rehab at my local hospital, and it’s a… Read more

Hi Jan. I haven’t been through the SSDI process, but have looked into applying. I read that it’s best if the applicant is no longer working when he/she applies for it. I’m still working FT. I work from home, so that helps with the side effects caused by my meds. I’d like to keep working as long as I can, though some days the workplace BS… Read more

I was officially diagnosed last summer (2022) but have had symptoms for years (shortness of breath on exertion, coughing, fatigue, very poor performance on pulmonary function tests, and progressive scarring on CT scans). My scarring is very aggressive. I’m on Cellcept to reduce inflammation and am waiting for insurance to approve my claim… Read more

I stay inside too. I also have heart issues that are affected by the heat. I do sit on my deck for a few minutes throughout the day to enjoy nature. But I do all my exercise inside. We have a nice treadmill, so that helps, and I also do pulmonary rehab at the local hospital. I’m so glad I live in the Midwest. It gets hot here too, but not like… Read more

Do you all work full-time, or are you retired? I work full-time and am concerned about if I’ll be able to continue working once I go on Ofev. Right now, I’m waiting for my insurance company to approve it. They denied it, but my doctor appealed. I wonder why some people have side effects and others don’t. So interesting!

I live in Iowa, where we don’t have wildfires but have been very much affected by Canada’s wildfires. The Iowa Dept. of Natural Resources issued an Air Quality Alert for all of Iowa, and particularly Eastern Iowa, this morning advising people to stay inside. It is very hazy here, and the AQI is bordering on the “very unhealthy” category. I’ve… Read more

@AdeleFriedman – Hi, my ILD is also caused by Sjogren’s. I’m on mycophenolate also. How can you tell that it’s resolved inflammation? What are some of the signs? I’m waiting for insurance approval to go on Ofev. My doctor is appealing their denial to pay for the drug. I’m only 60 and want to at least make it past retirement so I can enjoy… Read more