Camila Lopez
Forum Replies Created
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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.