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Suspending pirfenidone
After 3 months, lost appetite and 40lbs lost, dr allows me to suspend meds for 2 wks. Some appetite returned. I want to extend longer.. How long for side effects to fade?. I want toregain weight and stamina before restarting the protocol.
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13 Replies
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Hi Prof
I reduced my dose rate, 2/3s two tabs x 3 times a day. In my case my appetite improved, and I’ve stopped losing weight.
I feel a lot better, happier and more alive
Cheers Mal
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How lone after starting Pirfenidone did you start having side effect. I just started taking Pirfenidone. Just want to know what to expect
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I am fixing to start taking Pirfenidone. Can you give me the pros and cons on the medicine?
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A year ago I had a lot of problems with Esbriet,no appetite,no energy,and itchy hands and ankles.coughing. I talked with my pulmonologist.she suggested taking a break from the Esbriet.After a couple of months I went back with the lower dose for a month and the the 801 mg dose ,3 times a day.the problems were less intense and still have lazy days once in a while.the itching is every few weeks,but control with a salve .Appetite is somewhat better.Hope this helps .
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I have been on Pirfenidone for about a year, 3 tablets 3X a day. The side effects seem to get worse over time; however, a few months ago my pulmonologist started allowing me to take a 1 day hiatus once a week from this medication. He said that the side effects can diminish quickly, but the good effects of the drug fade more slowly and I have found this to be true. I do get a break from the sour stomach. Itching less so but I use CeraVe Itch Relief lotion, which helps. Some weeks are better than others. My Pulmonologist told me that I may not see improvements from this medication for 9 months, but I saw him this week and my lung capacity has increased from 35% to 90% since I started Pirfenidone and I was able to walk 300 feet without O2 and the saturation level never dropped below 93%! I tried a couple of CBD and THC cannabis products, which are legal where I live, but saw no substantial reduction in the sour stomach.
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I think you are giving people false hope with your post. Pirfenidone MAY slow down your pulmonary fibrosis but it is not a cure nor will it get rid of the already scarred lungs. Please tell me just how you went from 35% to 90% lung function. Just don’t think that is possible. It is not a cure … pulmonary fibrosis is a terminal illness.
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I have been on Esbriet for about 5 years. I had a lot of side effects early on (gastro issues, itching, sleeplessness, weight loss, etc.). I was told to cut back the intake for a month and gradually build back up. No issues after that. My weight loss was about 40 pounds but stopped and I have felt much better (I needed to lose weight anyway). I was prescribed Hydroxyzene for the sleep and itching issues (like Benadryl). It has help a lot.
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Hi,
I have been in a clinical trial for a newer form of pirfenidone (deupirfenidone). I take 550 mg three times a day and have had no side effects. The study ends in December so hopefully this is something that will become available in the near future.
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I’ve been on Esbriet for a year. I haven’t lost weight. I am tired but didn’t relate it to the drug. The only side effect that was noticeable to me is sun sensitivity. I wear a wide brim hat, long sleeves and pants as well as sun resistant gloves. I have noticed some nausea when taking the medication and dizziness when I first stand up. My pulmonologist said the dizziness is a side effect of the drug. It’s interesting how each person has varying symptoms. The good thing is that the progress of my disease is stable since being diagnosed in 2023.
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After being on PIRFENIDONE for 4 months my liver numbers from recent blood work has more than doubled. I now need liver ultrasound and repeat blood work. Pulmonologist may lower dosage depending on what is found. Since being on 3 tablets 3 times a day I am required to have blood work every month to keep liver in check. Has anyone else had this issue? I have had no other real side effects of this drug. Not sure yet if it is slowing down the fibrosis progression… will find out in July at my next lung function testing.
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I just started on Pirfenidone and will check live in a month. Thank you for info. Any other info you can give Will be appreciated
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Hi there!
Lots of information about Esbriet / pirfenidone on this forum 🙂 Feel free to use the ‘search’ function on the right-hand side of the main screen and do a search, lots of helpful contributions should pop up. Good luck!
Charlene.
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Hi, I’ve been on pirfenidone for a year now and so far the only side effects that I have noticed is the itchy skin- though I related that to just having dry skin and not hydrating properly- though now I see it might be related and the sun- I am very fair skinned- natural red head so very pale and freckles and now the sun is my mortal enemy- Just moments in the sun and my arms welked up and seems to be remaining blotchy so I definitely take care in sunshine.. No tummy troubles out of the norm so far, thank goodness but also I can’t really tell if the medicine is slowing down the fibrosis any- with LFT I am still at 50% -on oxygen 24/7 was on 2/3 Liters and now 4/5 liters- depending on movement.
I hope that you will not experience any side effects at all, wishing you well!!!!!
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