Camila Lopez
Forum Replies Created
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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.
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I was diagnosed in 2022. I was put on Esbriet, taking 267mg pills x 3, 3 times a day. In other words, I was taking 9 pills a day. For all these three years, I didn’t have any symptoms at all. I tolerated the medicine very well; my only issue was the sun, and that resolved. Now I started getting dizzy, which I attributed to the heat. Thank God I had an evaluation appointment. My oxygen went from 98 to 87 in 45 seconds while walking. The doctor prescribed oxygen 3L by day and 2L at night, and changed the dosage to 3 pills of 801mg per day. Lab tests showed a slight reduction in kidney function. I have an issue though. My portable oxygen concentrator weighs 5 lbs, which is too much for me because I have fibromyalgia and provokes a pain crisis. There are smaller concentrators, but they are not covered by Medicare. Wondering what I will do. My husband has dementia, and I’m the one doing the errands.
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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.
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Thank you all for your input. I really appreciate it!
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I started the 3 x 3 pills a day in July without any side effects, but now I get very dizzy after taking them. Does anyone know the reason for this? Thanks.
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Since 2015, I noticed that every time I had a CT Scan for back pain, or when I was at Mayo Clinic for atrial fibrillation, the findings on results said mild fibrosis lung disease. Not once any doctor mentioned that or suggested treatment. In 2022 a cousin mentioned that my aunt’s cause of death was fibrosis so I made an appointment with a pulmonologist. To my surprise, I was diagnosed with IPF. My CT scans now say that my lungs are extremely damaged, but unless it is divine intervention, I don’t have symptoms. No coughing, no out of breath, 02 level is always 99 or 98. Taking Esbriet for a year and the fibrosis is not advancing but the side effects are brutal. I hardly can tolerate the 9 pills a day dose.
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I really don’t know if I can post this here, if not please remove it. I have had a big problem with the sun’s reaction. I get a red itchy rash on my hands, neck sides/back, and face. I had a problem with the sun reacting with the sunblock which caused a rash too. I found a brand (other than Columbia) specializing in all kinds of SPF 50+ items like hats, clothing, and gloves. The name is Coolibar. I hope this can help you.
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I started Esbriet last August with minimal side effects, only fatigue. In February I developed skin itch on my neck, chest, and back of my hands. Pulmo suspended treatment for one month. As soon as I used Esbriet again in April the itch started again! I’m now using 2 x 3 a day. Pulmo wants me to start 3 x 3 but I couldn’t tolerate it last time. I imagine that the itch will get worst. Is there a proven remedy for this? I feel tired and sometimes brain fog. Is anyone experiencing this?
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Hello there. I started taking Esbriet in August 2022. I couldn’t tolerate the 3 x 3 daily doses but was doing good on 2 x 3. I always felt a bit without energy but other side effects were tolerable. Although my CT scan says I have extreme lung damage, I don’t have symptoms. I’m neither short of breath, nor coughing, and my oxygen level is always 99 or 98. The scarring wasn’t advancing. In February I was ordered to quit Esbriet for one month due to a lack of energy and itching. This April I was started slowly again but I was feeling without energy more and the itching started again immediately. My last IO PFT W/ PLETHYSMOGRAPHY result was a little better. Tomorrow I see the pulmonologist again.
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Daniel, thanks for sharing your story with us!
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Thanks for sharing!
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Thanks for sharing.
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I use Famotidine twice a day. Thanks for sharing.
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I hope you get better. Thanks for sharing.
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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.
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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.