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Esbriet reduced dose?
Hi my wife and I have escaped Tasmania’s long winter and moved 2500km north to Queensland for a bit of warmth.
Over the last few months I’ve stopped the mid day 801mg tablet, initially by forgetfulness, but now I prefer the lower dose.
I haven’t discussed this move with my pulmonary chap, but will when we return.
The benefits for me are considerable, no morning nausea, return to normal appetite, I’m lazing around in the sun with out any itching. With no deterioration in symptoms ie still coughing etc.
Has anyone here been put on just two Esbriet 801mg tablets per day by their doctor. One of my doctors suggested that if I continued to lose weight they could look at lower dose rate.
Queensland is great sunny mid 20c, (72+f) beach 5 Min away.
Cheers Mal
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6 Replies
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I’ve missed a few midday doses, but that’s all. I have no side effects from the full dose (unlike OFEV).
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Hi Malcolm,
I was diagnosed with PF in November.
Since February, I started taking Esbriet – trying to build up to 3 X 267mg (801mg) three times a day.
I could not tolerate it because of the side effects of dizziness, nausea and headaches. I have my own engineering business and with this high dosage (equivalent to 3 X 801mg per day), I just could not function.
As a result, my pulmonologist approved me taking 2 X 267mg capsules 3 times per day. This mean that instead of a total of 2,403 mg per day, I’m taking 1,602mg per day spread out in 3 doses of 534mg per dose (2 X 267mg capsules). This has made a big difference to me. I have relative few side effects and are not dizzy or nauseas. When I wake up in the morning I take 2 pain killers even if I don’t have a headache, before I have breakfast and take the first dose of Esbriet.
My pulmonologist is very happy with this and in my latest 3 monthly checkup my lung function had actually improved slightly.
I hope this helps you and suggest that instead of one 801mg twice a day, you could take two 267mg capsules 3 times a day.
Good luck.
Cecil Zlotnick
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Hi Malcolm,
My name is Chati and we recently found out that my father-in-law was diagnosed with IPF. This is a very recent diagnosis and he is going in for a secondary opinion (the appointment is more to confirm that he indeed does have IPF).
After reading one of your previous posts, I found that there are a lot of similarities between your health level and my father-in-law’s. We are still trying to learn as much as we can about the disease. And he will likely be prescribed Esbriet at his secondary appointment in August.
Since the news is only about a month old, our entire family is trying to understand what we can expect. Like you, my father-in-law, is in his late 60s (67 years) and in fairly good shape. He exercises regularly and still can function at a high level. He goes swimming and plays badminton and walks vigorously every day. I know that he and the entire family would appreciate hearing about your experiences.
Totally understand if you are uncomfortable with emailing us. We are just looking for people to reach out to so that we can understand what to expect in the few months/years.
If interested, please reply to this post.
Thanks for any information you can provide!
Sincerely,
Chati-
@mal-com 🙂
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Hi Chati
I did answer before but it wouldn’t post
Every IPF sufferer here has a totally different story, it’s the same insidious disease but it’s implications vary greatly.
In my case, I’m one of the lucky ones with mild symptoms that have only declined slowly in 6 years.
I find Esbriet very tolerable and I don’t require oxygen. My obvious symptoms are chronic cough, fatigue, and breathlessness on slight exertion.
When first diagnosed I asked about exercise and was told ” do as much as you can tolerate”
I walk daily 1 or 2 km, but can do 5-6km with effort I’m good on flat ground but very slow on hills.
I have adapted my swimming so I don’t kick, ie using a wetsuit or a buoyancy float that keeps me level in the water without kicking. I’m now breaking my swimming up into 200m sets and can still do 1-1.5 km with rests.
My only advice is listen to your pulmonary specalist and be as active as you can, I know that’s hard.
Cheers Mal
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My experience has been similar. When I asked my pulmonologist about skipping the noon dosage, she said there would be no harm done with the occasional miss but that I shouldn’t make the two-pill regimen a regular thing.
The best comment above was the one that said that we are all different. Adjusting to Esbriet (or Ofev) was hard, but it sounds like it was easier for me than for you. Nevertheless, I have the impression that everyone can develop tolerance; it just takes longer for some.
Keep experimenting with dosages, but only with your physician’s involvement.
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