Tagged: congestion, Esbriet, fatigue, side effects
- This topic has 14 replies, 12 voices, and was last updated 3 months ago by Rune Harboe.
November 22, 2022 at 7:55 pm #33650Garry GarciaParticipant
First thank you for all of the information and first hand experiences from others with IPF taking Esbriet.
Presently I’m on my second week going on my third week moving from two capsules three times a day to three capsules three times a day. If two capsules each dose is bad I can’t imagine three capsules each dose.
First my side effects: Fatigue. I fall asleep a lot. I’ll be sitting in my chair reading and two hours later my wife is waking me up.
Stomach problems not too bad, but go to the bathroom a little more frequently.
Occasionally dizzy, but not to the point where it is debilitating.
Trouble sleeping…..not falling asleep, but at 2:00 am like clockwork I wake up so congested that I can’t clear my throat or nose.
Diagnosed approximately three months ago but it first showed up in my lungs in 2018 when I had open heart surgery to replace my Aortic heart Valve and double bypass. They did a CAT Scan to check my lungs and surrounding tissues. At that point there was no mention that I had IPF and it was a pulmonologist who reviewed the X-ray. It wasn’t until this year 2022 that my primary doctor recommended me to a pulmonologist because he saw something suspicious on my yearly X-ray.
So my IPF has been there for 4 years and not diagnosed until three months ago. My wife and I were shown both X-rays side by side…2018 vs. 2022. No difference at all except the 2022 was better defined.
l like so many of you had a real difficult time getting my insurance company to help out. I have Humana/Tricare. They absolutely denied OFEV and after several tries and two months later they approved the Esbrit.
My question to this group is do you ever get used to taking it, do the symptoms lessen over a certain time. Do you ever stop thinking about it and what it’s doing to your body.
I’m 68 and will be 69 in March. Retired US Army Veteran.
November 24, 2022 at 2:21 pm #33687Malcolm MannParticipant
<p style=”text-align: left;”>Hi Garry</p>
I’m an 70+ Aussie Veteran, I’ve been on Esbriet for over 2 years with no great discomfort.
The side effects I’ve noticed are awful cough, fatigue, reduced appetite, changed appetite ie. things I once loved I can no longer eat, insomnia, the sun exposure problem hasn’t really effected me to much, I cop a fair bit of sun.
The main thing is the Esbriet has slowed down the IPF progression.
I’ve just been prescribed Codeine Linctus, (day one), for the cough and sleeping
November 30, 2022 at 12:30 am #33739Christie PatientParticipant
Community! Can you help answer these questions for Garry? I know all our experiences are unique, but insight is helpful. Thanks!
“My question to this group is do you ever get used to taking it, do the symptoms lessen over a certain time. Do you ever stop thinking about it and what it’s doing to your body.”
Hi Garry, I’m sorry you’re sturggling with symptoms. Most people do adjust, which you’ll find if you read around this forum a bit. I’m going to repost your question here for other readers to respond to. Since it was at the bottom of your post, it might have gotten skimmed over and not really read by some. Hopefully you’ll get more responses.
December 1, 2022 at 11:50 am #33743Norman BeattieParticipant
Garry glad to have you in the forum. Good questions.
I’m 70, diagnosed 6 years ago. Have used both OFEV and Esbriet and had the usual side effects. OFEV for a year and the diarrhea was too much so switched to Esbriet but the dizziness and feeling uncomfortable was too much so I went off both. Totally my choice but didn’t want to live with the side effects. You have to believe that the medication is working since no one can say how fast or slow the progression of fibrosis is per individual. I never forget I have IPF because I’m reminded whenever I breath hard or if the walk from parking lot to store is longer. It affects all facets of your live but it moves slowly so get longer with family and friends.
Garry I hope you begin to cope with the side effects and you have just started so give it sometime. When you wake at night you have to think of something else besides your breathing to get back to sleep. You don’t get better just your coping skills do.
hang in there
December 1, 2022 at 12:42 pm #33744Cecil ZlotnickParticipant
I am 74 years old. I was diagnosed with an interstitial lung disease a year ago. Approximately 30 to 35% scarring. I’ve been on Esbriet since February. My pulmonologist told me that the full dosage is 3 capsules, 3 times a day but if I could not tolerate the side effects, it would be acceptable to go with as much as I could tolerate. Well, I’ve settled on 2 capsules 3 times a day as 3 were too severe. Dizziness, nausea and splitting headaches. On 2 , 3 times a day I can tolerate the side effects which are still there.
What I’d like to know is whether with this dosage, is the fibrosis still being slowed or stopped. Anyone with similar experiences?
December 1, 2022 at 3:15 pm #33750Samuel KirtonParticipant
You have asked an eternal question. In many cases, including mine, there was no series of baseline CT scans to document the progression of PF prior to treatment. The CT scans taken during treatment show progression between scans. The presumption is that the anti-fibrotic, either Ofev or Esbriet, is working. Your pulmonologist is likely the best source to answer that question or offer an opinion on your specific case.
Personally, I believe Esbriet did slow the progression of my disease. I was taking the 3 tabs three times daily for the first year then I switched to the single tab three times a day. The effective dosage was the same. I found it easier to take the single tab than the three tab dosage. Sam…
December 1, 2022 at 3:02 pm #33747Samuel KirtonParticipant
First, let me thank you for your service.
I was diagnosed in January 2017 at age 59 with IPF. I started Esbriet (Pirfenidone) in Feb/Mar of 2017 and took it until the day before my bilateral lung transplant in July 2021. I never had serious side effects beyond sensitivity to the sun. There were no significant GI issues. I did meet early on with the Genetech Clinical Education Manager to learn more about the drug. I believe my success with Esbriet was the information on how to take the drug to avoid GI issues. As Christie
pointed out each of us has a slightly different experience with each of the drugs in our therapy based on not only our body but also any other medications we may be taking.
I also wanted to respond to your insurance question. When I was first diagnosed my insurance and prescription coverage were both from Tricare. Tricare initially denied my Esbriet and my pulmonologist appealed resulting in an approval. Each January my pulmonologist had to renew the continuing need for the medication. I suggest you work with your pulmonologist to get the medication right for you approved. Sam …
December 1, 2022 at 3:09 pm #33749Alan ParkParticipant
I was unable to tolerate Esbriet. Initially I started with 1 capsule 3 times per day, gradually going up to 3 capsules 3 times a day. Every day, and I do mean every day, I was extremely fatigued with dizziness and nausea. I stopped taking Esbriet and the symptoms stopped. After a year my doctor advised that I start again with Esbriet, this time only taking 1 capsule 3 times/day. Unfortunately the same symptoms started again on a daily basis, so I stopped. Fortunately my IPF has not gotten any worse, but who knows when it can flare up again. Just for information, I never did use OFEV because I have 3 heart stents.
December 1, 2022 at 3:35 pm #33752MarioParticipant
Garry, when I began Esbriet 4 years ago, I had some difficulty with the smaller tablets, as they begin working in stomach. If you switch to larger tablets, they have less effect on stomach as most of their activity begins in intestine. My major side effect is stomach acid which I control with baking soda in water. I also supplement with Metformin ( off label use), turmeric and quercetin. All 3 have been linked to an improvement in ipf scarring, but unfortunately, as they are inexpensive to buy, no one is willing to do the research on effectiveness unless there is money to be made, such as $9k per month for Esbriet. However, my doctor reports I am stable after 4 years, so I just keep using. Good luck. Try to walk as much as possible and stay active. It helps.
December 1, 2022 at 4:29 pm #33755William PommyParticipant
I am 77 years old, and have been taking aspirate since it was approved by the FDA. I did have a few issues as the prescription increased until I reached nine pills per day, which is what I’m on now. As long as you follow the instructions, I see no problems with digestion. Halfway through my meals I take the three pills. That works. On occasions where I have to take them alone without a meal I use some Mylanta, which prevents any discomfort. I guess it is working. I was diagnosed 14 or 15 years ago and in my last conversation with my pulmonologist, I asked about longevity. She said she wouldn’t be surprised if I lasted another 15 years. I had done Pulmonary Rehab and have been planning on going back. Rehab was great.. mindfulness was helpful… as was prayer. Unfortunately, I’m doing none of these right now and I’m trying to get back to rehab.
December 14, 2022 at 10:39 am #33877Cecil ZlotnickParticipant
Since my last thread on 1st December (above), which was after an exacerbation in August, I started having difficulty breathing and had to use oxygen all the time – about 2l/min I went for a CT scan and saw my pulmonologist the next day.
I was shocked to hear that although my lung function was similar to a month before, my CT scan should progression of the scarring of my lungs. Over 3 months, I have gone from 65% lung capacity to 40%. I am still on 2l/min of oxygen with my oxygen level being over 90%, but walking short distances causes me to be short of breath and my oxygen plummets to 70%. Walking upstairs is much worse.
As explained before I was on 2/3 of the full Esbriet dosage as I couldn’t tolerate the full dosage. As a result of this worsening of my lungs in a short period I am now on the full Esbriet dosage with the hope that it will stop the progression of the fibrosis. Has anyone had a similar experience?
Now my pulmonologist is advocating taking Esbriet together with Ofev. I am terrified of doing this. Has anyone the experience of taking both at the same time and will it stop progression of the fibrosis? Can the side effects be tolerated?
I am 74 years old and am too old for a lung transplant. Please help with ideas and experience.
December 15, 2022 at 3:24 pm #33896Phil RyanParticipant
I am 76 and have been taking Esbriet for over 2 years. I never had severe side effects, but now am experience very little. I sleep well, have good appetite, and have had no liver deterioration. Likewise, no coughing, or sputum. I do feel a bit fatigued for about 30 minutes after first taking it, but this is minor. I am also taking Tyvaso for Pulmonary Hypertension, also with minimal side effects.
December 17, 2022 at 1:50 am #33915Jeffrey CarverParticipant
I’m 73 and have been on Pirfenidone (Esbriet) for a few months now. I had trouble at first, mainly with fatigue and my sleep being messed up. I paused at 6 tabs/day, cut back to 4 for a couple of weeks, and then started increasing. It went better the second time, and I’m now taking the full dose of 9/day. I still get some fatigue, but overall it’s a lot better now.
I’m also taking EGCG, the green tea extract that was reported in our newsletter a while back (a small study showed it being possibly more effective in slowing and maybe even stopping the fibrosis than either Esbriet or Ofev; very small study, but controlled). I think those capsules are harder on my stomach than the Pirfenidone, but still tolerable.
December 20, 2022 at 2:29 pm #33923sally williamsParticipant
I have been on Esbriet for almost a year. I think the key is a really gradual increase in the number of pills per day…it took me over 2 months to get up to the full day dosage. Good luck.
December 20, 2022 at 3:07 pm #33924Rune HarboeParticipant
I have been on Esbriet since being diagnosed with IPF 6 years ago. Taking 3 capsules 3 times a day – 267MG. Had side effects (stomach problems) at first, but then I read somewhere to take protein before taking the medication and that has helped. I am 80 years old and one side effect I have is dizziness when first getting out of a chair or standing up (people may think I have had one too many :-)). I am lucky compared to others on this medication. I also sleep a lot, but that is probably caused by old age, not the medication.
My doctor prescribed Esbriet after I was diagnosed with IPF but did not mention severeness of my illness nor any other medication. The doctor mention that the progression of the illness is like a step function going downwards, but did not mentioned how long I had to live. I had a biopsy, but it was inconclusive. Thinking back, I now believe my mother had IPF because she became out of breath just walking a few steps at the end of her life. Starting to believe the illness may be inherited based upon what I have read on this forum.
Wish you all the best with a merry X-mas and a Happy new year.
Regards – Rune
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