Esbriet and fatigue

[Carlo De Pellegrin]

I have been on Esbriet and pirfenidone for almost 4 years. It seems the last year or so I have been experiencing significant morning fatigue and loss of breathe with relatively minor daily routines. I also have significant cardio issues so not sure of cause? I have 6 stents…..

My breathing tests and CT scans have shown very, very little deterioration over the last year.

I am also doing laser treatments that no doctor will approve other than the doc at the laser clinic.

I am continuing to do laser in the hopes that it, along with pirfenidone keep my IPF stable.

[Camila Lopez]

Thanks for sharing.

[Ron Price]

I have been on perfinadone since July 2023.I get really fatigued when I take my 2nd dose of the day.I also get a upset stomach often.the good news is I get the medication from the Va for $8.00 a month.my blue cross medicare plan would have charged $800.00 A month. Does anyone have any suggestions for the upset stomach problem ? Ron Price

[Camila Lopez]

Hi Ron, for a long time since my gallbladder surgery I have had gastro problems. Nevertheless, I haven’t had issues with pirfenidone. Since my first dose, I took them with Dan Active, a liquid probiotic. Another brand is Activia. I think it has helped me. I hope this helps.

[julian]

I’ve been on Pirfenidone for 8 months. My gastro issues include more of a “sour” stomach than pain or heart-burn from acid reflux, which I had for years and know how it feels. However, the discomfort makes me feel like crap all the time. I do get some relief from Pepsid, which my pulmonologist recommended. I’ve heard of others taking Imodium, but have not tried it. I constantly go from diarrhea to constipation and take Miralax daily. I was originally on Ofev, but it caused such severe abdominal pain I was switched to Pirfenidone. With Pirfenidone I was having infrequent dizzy episodes. I was also on a low carb diet at the time. Increasing the carbs helped with the dizziness.

[harvey]

Ron,

Mark Cuban has a website where he sells prescription drugs really cheep it’s called Cost Plus and they sell Esbriet.

[Marty57]

I had to stop taking it after about a year because my stomach was hurting so bad . It would be tolerable in late evening until I would take my morning dose and in about an half hour or so my stomach would hurt so bad that I couldn’t do anything and I do have a high tolerance for pain.

[George Beck]

I have been on Esbrit for about three years and have fatigue. But I had some fatigue before that. Diagnosed in 2019. I have heard that PF itself causes fatigue. My only other side efffect with Espirit is itichiness. Fatigue is my major problem along with some dizziness.

[harvey]

if by hurting you mean acid reflex which is a common side affect using Esbriet try, using omeprazole it works for me. I get really bad heart burn without it.

[Camila Lopez]

I use Famotidine twice a day. Thanks for sharing.

[Denise Stogdill]

Hi all. I have been taking Ofev since June 2022. While I’ve often suffered from fatigue during my journey with RA, Fibromyalgia and now IPF, I hadn’t experienced fatigue like I did this last weekend and now. I’m wondering if I’m entering a permanent phase of fatigue that I often read about from brothers & sisters that suffer from this god forsaken illness! I was diagnosed April 2020. While I had felt very tired at times, this last weekend was the worst fatigue I have felt in the last 4 years. I’m wondering if I’m entering a new level of fatigue in this disease. Has anyone experienced this in their journey? While my scarring and numbers have not changed, the only thing that seems to be changing is the fatigue. Please tell me what your experiences have been. Thanks warriors!😷

[Camila Lopez]

This has been exactly my problem. I started experiencing fatigue in February. Not all the time, for example, going from one room to another or changing my clothes.

[Lou]

Hi everyone.

I have been on Esbriet with no issues for 6 years. It has done its job. Little or no progression. Last December I began to notice I could do a little less each day. This progressed to where even little things were exhausting. Walking wiped me out. Winded and SOB quickly. Had to give up golf. Exercising was possible through a cardio pulmonary program but my O2 stats started dropping. I more or less stabilized at a level where I could do many things but not all. Then, I got Covid again so mild I could hardly feel it. No temp, no nothing. Took Paxlovid and was better almost immediately. 3 weeks later all my energy disappeared and it’s a big effort to do anything. Home Health Care says I’ll recover but it will take a long time. Every day with PF is a battle. You have good days and bad. I wish it were different but it isn’t. One day every one will hit a wall and lose strength and power rapidly. Just keep fighting and do what you can. Beating this disease means getting as many years as you can.

Lou

[Camila Lopez]

I hope you get better. Thanks for sharing.

[Paul Caden]

Been on perfinidone for 5 years now and my lungs have not deteriorated very much. My life has been about 90% normal but with shortness of breath. To prevent nausea, always eat before taking , including bread or other absorbing foods. O2 still 94_95 at night on Google watch. Family, friends, cycling and not thinking about this disease all the time keeps me sane and happy.

[Camila Lopez]

Thanks for sharing!

[Camila Lopez]

According to most of the replies, Esbriet users are getting this fatigue after years of using it. I wonder if anyone consulted their doctors or Esbriet about this and if they gave an opinion.

[daniel nogueira]

Hi all, I think I was lucky to get an early diagnose because I used to swim and saw that everyone did one pool after another while I had to take 20-30 seconds breaks between pools (25 meters). I still did 60 pools or about a mile in an hour. I’m 69, diagnosed end of 2020 and on pirfenidone since Feb 22. My pulmonologist back in Uruguay (South America) says I won the lottery because I have no collateral effects whatsoever. My lungs scarring, however, increased in the past year and my pulmonary capacity reduced by 10% to 75%. But I took back golf and play 9 holes three times a week, riding on cart, as walking kills me, as I found out. I still do a good deal of walking because we play so badly, me and my friends. So it is common to see we walked at least a couple of miles when we finish.

Now, going to the fatigue issue, I have seen it increase lately but don’t really blame it on the medication but rather on the desease progression. Besides, my health provider put me in a respiratory rehab 3-month program, which should generate some sort of exercising routine habit. Highly recommended.

I am currently in the U.S. for a week as I decided to come to the Mayo Clinic for an evaluation. I understand one of the recommendations will be to change from pirfenidone to nintedanib (Esbriet to Ofev) although this will mean a huge financial impact.

One other thing, and please excuse the length and fairly out of matter reply. I worked for many years for a clinical trials company (in Finance, I’m not a doctor!) and I’m convinced it’s the best option for uncurable deseases when the available approved options are not working. One of my goals with Mayo is to investigate this option, although you should be aware of the risk of getting the placebo (50%) instead of the experimental drug. But risk is my second name when I think that I could be gone in a couple of years. Joining a clinical study costs nothing as you become a voluntary participant. Not in Mayo, but there’s a study called Revert (Tvardi), successful in the initial non-human phases and currently in phase 2, that is expected not only to slow and stop the scarring, but to reverse it. The annual congress of IPF is next week in Boston and something will be presented by the drug developers (fingers crossed!). Attending the event costs $3.600 for 3 days, so I prefer to read the findings later 😁

Folks, a pleasure to be a part of this group and read about your experiences. It’s very good not to be alone. Cheers.

[Camila Lopez]

Daniel, thanks for sharing your story with us!

[Don Blitz]

I was diagnosed in 2018 and prescribed Ofev. I experienced stomach pain, diarrhea, and 30 lb. weight loss but stuck with it because my PFT’s were stable. I was changed to Esbriet about 18 months ago because of nephrotoxicity and the fact that I had had to have a kidney removed for cancer. The only side effect I have had has been about gaining back 20 lbs. I still play Pickleball 3-4 times/week for 2-3 hours without any significant shortness of breath. I’m sure there is some increase in fatigue but I attribute most of it to increasing age (83 y/o).

[Rick]

I’m on ofev. And have had chronic fatigue even before the ofev.

I believe it’s related to the illness. 😘

[Bouleversee]

I agree wth silentwarrior. I had some of the effects attributed to the medication (fatigue, loss of appetite and weight) long before I was prescribed Ofev (Nintedanib) in March 2024,(over 7 years since reporting symptoms to GP and over 4 years since diagnosis was confirmed) . My sats levels have gone down as have my lfts. In England, IPF patients were made to wait for treatment till their condition had worsened to a certain degree. I think the cost of treatmnt was behind this. After dutifully shielding during the pandemic, I actually caught Covid waiting in the queue for my booster Covid jab. I wasn’t particularly ill but I suppose my recent exacerbation (I am now very breathless the minute I stand up, let alone try to walk and I have lost a horrendous amount of weight because I have no appetite and a very dry mouth and can’t swallow dry food) could be Long Covid. Whatever, I need to get my affairs in order!

[doggal]

About the fatigue issue. I have been dealing with ipf for 10 years. I am now a zombie and sit and nod off all day. My doctor is worthless. a typical appointment consists of checking heart and lungs and blood pressure blah blah and come back in six months if your still alive. which currently i hope not too.

[Sandyman]

Perhaps you could go to a physician that is unaware of your IPF and get a diagnosis based on their lack of not knowing this and you could be checked as regular patient without focus entirely on IPF. You already have a Physician for that

[John Fraze]

I take OFEV but have the same lack of stamina issues. I struggle to go to the bathroom. It has gotten much worse the last month but has leveled off.

[Camila Lopez]

This is an update. After 3 years using Esbriet and no symptoms, now things are going downhill. My oxygen level is affected, and I was put on oxygen using 3L during the day and 2L at night.

[hi-c]

After 8 years on OFEV I was switched last year to Pirfenidone. I also struggle with the fatigue issue and like Ron especially the mid day dose. Some days can muscle through and others I’m done…

[harvey]

Mark Cuban has a website where he sells prescription drugs really cheep it’s called Cost Plus and they sell Esbriet.

[Sailor]

I have been on Esbriet for approximately four years now. My IPF has been determined by the VA to have orientation from herbicide exposure from the early 1970s. I began to experience breathing problems recovering from a major surgery in 1977 and anytime I was recovering from general anesthesia. The VA was aware of scarring of my lungs at least 25 years ago, but never felt it was necessary to let me know. Fast forward to 2020 and an internal medicine doctor was planning to do an operation, but due to my reported issues recovering he choice to take a close look at my lungs and suspected Pulmonary Fibrosis which was confirmed by biopsies of both lungs.

I had been progressively experiencing shortness of breath, fatigue, and dizziness. Short walks became more difficult and tiring.

Esbriet after nine months began to show signs of slowing down the progress of lung degradation. I had problems with GERD for at least thirty years. The last five years the fatigue and feeling of being exhausted with the least amount of exertion and dizziness has worsened. Sour stomach pain included, but Pantaprozle has provided some relief.

A recent cardiologist appointment revealed Afib. He said he noticed an exponential worsening scarring sound of the lung. He described my dizziness and fatigue to the T. My heart medication is currently Plavax and he is changing it out to another to prevent another stroke.

My doctors have been telling me to transition to my VA provided power wheelchair full-time for trips outside of the house. Due to other injuries to my spine I use a rollotar walker in the house due to back pain, dizziness and exhaustion.

I’m not sure if Esbriet has caused me to get dizzy, exhausted or sick at my stomach. I suspect it may contribute to it, but deteriorating lungs cause many other problems with our organs having to work overtime to compensate.

[David]

I maybe different. I’ve been taking Esbriet since early 2019. I’ve read many sites and the information about Esbriet (symptoms of users, etc.). I’m 75, and am feeling and seeing some changes to my body and activities.

I take it all in stride as I’ve watched grandparents, parents, relatives and friends with different issues all slow down over time. I think my “fatigue” has to do with with all the pills I take for other issues, including IPF, it’s a mitt full, and is quite a drug cocktail 3 times a day. That, and just growing older.

Following a recent CT Scan I was given another 6 to 7 years, that will put me at 82, and then maybe I’ll get anther 6 to 7 estimate. What bothers me the most is my lower back. Herniated discs and spinal stenosis. I ‘ve had several surgeries that took away the pain I couldn’t live with for a pain(s) I can live with.

Even with my conditions I’ve already outlived many relatives and friends…So what’s to be angry at?

[Mario]

I have been able to control the gastric symptoms caused by Esbriet by placing a teaspoon of baking soda in a glass of water. Works wonders, and all natural. Also experience fatigue after second dose, after 5 years. However, small price to pay for no disease progression.

And finally, Cost Plus online pharmacy sells Perfenidone for about $150 for a 30 day supply.

[Michael Fitzgerald]

I have had IPF for 7years and have been on perfenadon for that period of time, I am also 91 years old and have attributed fatigue to my age.