Forum Replies Created

  • Camila Lopez

    Member
    August 12, 2023 at 8:11 pm in reply to: Dizziness with Esbriet

    Thank you all for your input.  I really appreciate it!

  • Camila Lopez

    Member
    August 7, 2023 at 10:16 am in reply to: Dizziness with Esbriet

    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.

  • Camila Lopez

    Member
    June 29, 2023 at 11:19 am in reply to: How did you find you had fibrosis?

    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.

  • Camila Lopez

    Member
    May 23, 2023 at 10:09 pm in reply to: Side effects of exposure to the sun

    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.

  • Camila Lopez

    Member
    May 8, 2023 at 10:46 am in reply to: Itchy Skin with Esbriet

    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?

  • Camila Lopez

    Member
    May 4, 2023 at 8:23 am in reply to: how long can you take Esbriet?

    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.