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Starting Esbriet after stopping Ofev
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Question, which may be of interest for others:
If one of the two anti fibrosis medicines does not stabilize the disease does it make sense to try the other despite side effects?
My case: Tried Ofev off and on for 2 years with bad side effects such as diarrhea and weight loss but my IPF was stable. Then, because of Ofev’s side effects, my doctor switched me to Esbriet. Esbriet side effects were tolerable but my IPF worsened and the doctor switched me back to Ofev and told me to live with the side effects.
Have any of you found that one of the two medicines was effective in fighting the disease but the other was not?
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Thanks all. I haven’t yet taken the plunge, so these discussions are helpful.
John
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Hello from the pacific coast of the US @mal-com. Thank you for sharing — your swimming routine sounds amazing, and I’m so glad you’re still able to do this. I look forward to getting in the ocean really soon and seeing how/if it helps. I know it will help my spirit and mental health if nothing else, its my favourite place to be 🙂
Char.
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@renehakkenberg
Hey Rene,
Our friend @mal-com had a hard time getting this reply posted to you because of the silly forum issues! I said I’d post verbatim on his behalf while we work to get the issues fixed. Here is his reply to you:
“Hi Rene
Where about are you in this weird world, I’m in a little beachside village called Tomakin on the NSW Australian South Coast.
This disease effects us all differently, my pfts were continuing to decline, even on Ofev 100mg’s twice daily. My Pft results come with a nifty graph which shows a steady decline from the time of diagnosis to present. Because of this continuing decline my pulmonary specialist suggested switching to Esbriet last year. I resisted for 6 months as I was apprehensive of the sun exposure problems, as my normal attire is t shirts and shorts.
After further GI problems, I decided to stop Ofev. The specialist and the Interstitial Lung Disease Clinic I visit in Sydney were quite happy for me to switch over. I’m on a military pension, but there is no cost for either drug here in Australia.
I wouldn’t consider going back to Ofev, I know plenty of people have no problems with Ofev, but for me the side effects outweighed any benefit.
cheers
Mal” -
Hello Michael, thank you for sharing your experience with Esbriet. Your insights on how you adjust your dosage is informative for others who are going through some adversity while on esbriet. It is also great to hear you are remaining stable with a slight pft improvement. Take care, Mark.
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Hi Mal, well, finally received your post thanks to Charlene who blamed silly forum issues. Or was the problem that your Metropolis, Tomakin on the NSW(?) Australian South Coast has no internet, of course it could also be excessive beer although that is probably not possible.
I live in the island of Bonaire, part of the Netherlands, and located in the Southern Caribbean, and famous for scuba diving and snorkeling. Population 20,000 and I am unfortunately very unique, being the only one with PF/IPF. Tell me more about Tomakin, do you have good fishing? Scuba?
As I mentioned I took Ofev for 2 years off and on, with lots of GI problems causing too much weight loss on an already lean frame. My IPF was stable but the side effects were not tolerable. Then I did Esbriet for 8 months, had no GI trouble, except lack of appetite and further weight loss, but my IPF deteriorated according to PFT’s and CT scan. Talked to my doctor and she put me back on Ofev. For one week I am now on 2×100 mg Ofev and tolerate it well so far, knock on wood. But still no appetite. I do an hour of exercise 6x per week. Through all this my SOB has steadily gotten worse.
Mal, tell me more about Tomakin, sounds interesting…
Cheers,
Rene
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For the record @mal-com and @renehakkenberg, I am so very jealous of your destinations!!! Surrounded by ocean and beauty, must just be amazing! 🙂
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@renehakkenberg @charlene-marshall
Answer is coming, the computer ate my homework 🙂
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Oh man, sorry to hear that (again!) @mal-com. Arg!!! Let me know if you want me to post your note for you. I’ll check in with our tech team and see if they have any advice to share to stop that from happening in future!
Char.
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Hi All progress report, I changed over from Ofev to Esbriet in May this year because of side effects with Ofev.
Recently I have had two wins.
Since switching to Esbriet I have had no stomach issues at all, and and no other debilitation side effects. A month or so back I was starting to get a rash around my nose and forehead, and I was fearing the worst. I treated it with an over the counter steroidal cream and more sun block, which held it at bay. I have since changed from the 3 Esbriet tablets three times a day to the one large tablet three times a day, and since then I have not had any skin issues at all. Despite getting a lot of southern hemisphere sun.
The second win is, that after my first pulmonary function test (PFT) for a year my IPF has remained almost stable with virtually no decline, on paper. To me there has been decline in breathlessness, endurance, walking hills and lethargy, these observations are not supported my the PFT results.
Ive done a couple of 1.5 km ocean swims with the surf club, and survived, so “there’s life in the old dog yet” to quote an unnamed expert, and to Rene and Mark my beer tolerance is improving.
cheers Mal
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Hello Mal, thank you for sharing. This is wonderful news to wake up to on a crisp Ohio Saturday morning. I don’t know what I find more fascinating; your swimming endurance or you getting your tolerance back for beer. I’m happy your skin rash wasn’t severe. The sun precautions is the reason why I chose Ofev when it was time to choose. Thank you again for sharing this great news. Take care , Mark.
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Mark,
Let me address the most important thing first: Mal’s tolerance for beer! I have been concerned about that since he first posted about it…not that I like my beer…..or maybe I do.
Second, I chose Espbriet over OFEV because I was more concerned about the GI effects that I have heard about with OFEV. I am an avid bicycle rider, I ride 5 days a week for an average of 2 hours in sunny Florida. I figured I could protect myself from the sun, but bathrooms can be hard to find, so I chose Esbriet. Plus I was under the impression Esbriet was cheaper (found out it isn’t, at least on my insurance). I use 50+ sunscreen on my face, got some sun sleeves for my arms. I am 90 days in and am happy to report no issues with the sun sensitivity. I hear that may change, but so far so good. I know we all react differently, but that’s my experience.
Pete
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Hello Pete, I see that great minds think alike. You make an extremely good case for choosing Esbriet over Ofev. On trip to Kansas in 2015 I was having some gastric problems and had to google rest stops where I could use the facilities. However that was the exception for me as I only experienced gastric distress periodically. It makes me happy when I hear of patients remaining active as you and Mal are. You both should be commended. I’m glad you are tolerating the sun with precautions. You take care and enjoy that Florida sun. Mark
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I’ve been on Esbriet for a year now. 3X800. I’m just wondering if others feel that the Esbriet further adds to the near, if not always feeling fatigued.
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Two years on Esbriet here. During first year I also was on a 3×800 dose and had permanent headaches, fatigue, reduced appetite and upset stomach. Reduced to 2×800 daily and feeling 70% better. except for the stomach part. Fatigue sometimes hits me for a couple of hours after taking the pill. So the second dose I usually take before bedtime so it doesn’t bother me as much,
I hope this helps
God Bless
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I have been takin Ofev for 6 months. Normal side effects (diarrhea, fatigue, loss of appetite). Recently all symptoms getting worse. I have lost 25 lbs in 3 months, eat almost nothing, food tastes terrible, significant increase in fatigue (have to use rollator). My pulmonologist has me stopping Ofev for 4 weeks.
I have been reading responses to Esbriet; it’s a mixed bag. The only benefit I can see is the new generic version of Esbriet is much cheaper. Most posts I read from people who switched from Ofev to Exbriet were positive experiences. Except many of the same symptoms (fatigue, weight and appetite loss) were the same. At some level it seems like a crap shoot; different people react differently. Minimal breathing problems, oxygen stays at 95-98. I would appreciate any advice; my life has become diminished (primarily due to Ofev).
Bob Henderson
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I was diagnosed by a pulmonologist with IPF in 2012 after visits to my general practitioner with complaints of SOB and a chronic cough. In 2016, I began oxygen therapy. I believe it was 2017 when I started OFEV and, due to intestinal issues and a constant foggy feeling, I stopped in less than a year. That was not a quality of life I wanted. Then I began Esbriet and, after some trial and error, settled on a reduced dose of 4 of the 9 capsules per day. This went on for over 3 years. During that time, I lost interest in eating. Nothing in the store looked or smelled good to me. Foods I have loved all my life, I could no longer tolerate. As a result, I have lost about 30 pounds since spring and 60+ since diagnosis. My quarterly PFT’s were stable for a while but in the past 6 months show a more moderate decline. That wasn’t surprising to me as my SOB was worse, weight loss continued and I was using more oxygen. Three months ago I consulted my pulmonologist and we agreed I would stop the Esbriet in hopes of sparking a return of appetite. I saw my doctor a couple weeks ago and we decided to stay off the Esbriet. I was not in the best place mentally for quite some time. Suddenly, in the past 2 weeks I have had a return of appetite (oh, those burgers taste so good again!) and have added a few pounds back and have had a surge of energy. I have been much more active because I once again feel like doing more. Don’t know if this is finally a result of going off Esbriet or just some type of plateau. I still have my SOB issues, of course, but it just feels good to have some energy, see friends socially again and not feel like I’m on such a fast downward path. Bill
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Bill, sounds like you have been down a road I am just starting regarding problems with meds. I, too, can’t eat, have lost weight, and have no energy. My pulmonologist took me off ofev. Doesn’t sound like esbriet offers much of an alternative. Do you think the problems are a cumulative effect? Is your pulmonologist suggesting alternatives? What are your choices? On/off with the drug ? No drug? What are the implications of your decision? Don’t think I can accept the poor quality of life I had with ofev. Would appreciate your thoughts. Bob
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