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Not taking antifibrosis medications
I would like to begin a discussion with patients who have been diagnosed with IPF. I have been diagnosed with that disease, but the side effects of the 2 available anti-fibrotic medications have led me to delay taking either medication. I would be interested in discussing your decision and if you are aware that your condition has worsened and in how much time. Currently I only use supplemental oxygen for exercise. I do not have a cough, but have some mucous in back of my throat. My breathing is about the same since I was diagnosed in January 2025. There is some shortness of breath , but my oxygen levels remain about 93-97 .
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10 Replies
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Hi RobJ,
I was diagnosed in January 2017 and began taking Esbriet (pirfenidone) in February 2017. I do believe it slowed the progression of my IPF. I began using oxygen in the Fall of 2019 at 2LPM for exercise, and by the Fall of 2020, I was up to 7LPM to walk across the room. My care team talked to me about the side effects of both anti-fibrotics, and I selected Esbriet.
I suggest you make a list of the side effects that bother you and discuss them with your care team. My Esbriet side effect was an extreme sensitivity to the sun. My workaround was long-sleeve shirts, long pants, a good hat, and sunscreen. Those workarounds came in handy post-transplant, when skin cancer risk is increased for many post-transplant patients.
Sam…
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Hi Rob, I am 78 and was diagnosed with IPF April 2020. I was symptom free until last year. I tried Perfenidone and OFEV but both gave me terrible diarrhea and nausea. I gave up the meds after a month of trying. I also went to 2 different Respiratory Rehab programs, one with the VA and one with my health insurance (18 sessions of 90 min). I’ve lost 40 lbs. in the last 6 months off of my normal 160 lb frame. My advice to you is try what you want and pay attention to the results. You are early into this journey versus me going on 5 1/2 years. I don’t need oxygen while I’m sitting which I do most days. Whatever I have left, I want to be comfortable . As you know this disease is non linear which means its progress can’t be predicted. The efficacy of those drugs is less than 40%. Do what you want to fight its progress and keep in mind that it’s as individual as we all are. Don’t follow anyone unless it works for you . Be your own best advocate ! Wish you well.
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I too am concerned about the side effects of both anti fibrotics. I was diagnosed in 2020 and started using O2 in 2024 for exercise and at night. I was on 2 liters at night but recently have decreased to 1 liter. My Apple Watch monitors my O2 Sats as well as heart rate while sleeping. My pulmonologist keeps recommending Ofev but I keep declining at present. There has been no change in my HRCTs over the past three years or my PFTs. I am waiting for some of the clinical trial medications to be available hopefully in 2026. I will be tested again in November and if my IPF has worsened, I might at least try Ofev or Esbriet.
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I take Pirfenidone. It took a couple of months to get side effect under control. But it’s a lot better. Each decide for themselves.
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I am 75 years old and was diagnosed in January of 2021. I have been taking the generaic of esbriet, perfinidone. At first it bothered my stomach until I learned to take it with a meal, or atleast a protein shake. It makes me very sensitive to the sun so I start every morning by applying spf 50 sunscreen. I wear light long sleeve shirts in the summertime with a hat. I got rid of my boat to further reduce my sun exposure.
My Pulmonologist allows me to come off of the drugs when we go on vacation, but I am still cautious with sun exposure. I have experienced very minor progression while on the drug for almost 5 years. I don’t need oxygen. We recently flew to France (no oxygen problems) and walked for over 70 miles in 12 days.
I think the meds, exercise, and maintaining a positive attitude have allowed me to remain active. I sometimes get tired, but it is manageable. Having a wife and family that is supportive is also key.
I know our prognosis is not good, but I intend to enjoy the life I have left, although I may have to adjust my expectations.
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Thanks to each of you for sharing your experience, thoughts, etc. re the 2 anti fibrotic choices we currently have. The more information we gather helps us to look at real life experiences of others who have been afflicted by these horrendous lung diseases. I will have a pulmonary function test done before the end of the year to give me an updated account about the progression of my IPF. In the meantime I continue to follow the news about drugs such as Nerandomilast which is being evaluated for its safety and effectiveness, and perhaps fewer side effects.
Unfortunately , the side effects of drugs for treatment of other medical issues have led to my reluctance to use Ofev or Esbriet due to similar issues. Tolerance and quality of daily life are considerations I have to continually weigh.
I have hope and believe that a breakthrough med may help all of us in the near future.
Continue to share your thoughts and ideas . We all can support one another through sharing.
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I saw in an earlier post a statement that the efficacy of OFEV is less than 40%. On its own this could be interpreted that the drug does not work well and this is misleading. In fact the following is the real efficacy of the drug: Clinical trials demonstrated that OFEV reduced the annual rate of FVC decline by about 50% and lowered the risk of acute exacerbations by approximately 47%.
Slower decline of FVC directly relates to quality of life and reduction of acute exacerbations relates to life expectancy.
I’ll take the side effects and their impact on my quality of life to obtain a slower decline and longer life expectancy.
This is everyone’s personal decision but throwing out efficacy numbers that are incorrect and without context is not a good thing to do.
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Cynthia I was diagnosed October 2020. Have been on oxygen from beginning 24 hours. I choose not to take any of the medicine. Have not regretted. I do stay active doing a 30 min 1 and 1/2 mile at least 5 days a week alone with weight training. I eat good with fruits and good veggies every day. I am 82 yo and still active. I have not had any cough. I do morning and night breathing exercises. I have had some changes over the five years but nothing that has taken me down much. The heat and cold weather is tough. Oxygen started at 2 l with 3 for my walking and now it is 3l with 4 for exercising. Not much change with scans but is due one in nov. only get one once a year. Hope this helps you
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I was diagnosed with IPF about four months ago. I too have decided not to take the two primary medication’s. I have been reading about red light therapy and have purchased and am using a platinum LED bio Max light. Platinum LAD is the brand name.
Also, I would recommend reading A Matter of Life and Breath, by Lee Fogle. His breathing exercises on pages 113-116 have been especially helpful.
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I am very sensitive to drug side effects. After 2 years if being diagnosed with no change in my pulmonary tests and SaO2 sats at 98-99, I have started on Ofev at 100 mgs bid.
So far so good. I take the meds with nigh protein shakes and fingers crossed, no prblems. Please don’t let the side effects scare you off. There may be a way to start off at a lower dosage. Hope this helps.
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