how long can you take Esbriet?

[Cecil Zlotnick]

Hi everyone concerned with IPF or ILD.

I am 74 years old and am from Johannesburg South Africa.

My story started when I was diagnosed with an interstitial lung disease in November last year after a bout of pneumonia and a CT scan.

I have 65 -70% available lung capacity with the remainder being scarred or having fibrosis.  I do not have any underlying autoimmune disease and the origin of my disease is unknown.

 

I have been taking Esbriet since February and have settled on 2 X 267 capsules 3 times a day, which is the maximum I could tolerate due to the debilitating side effects.  This is 2/3 of the full dosage which is acceptable to my pulmonologist.  When I was on the full dosage, dizziness, headaches, nausea and tiredness prevented me from working.  I have an engineering business and need to work full time.

Until August this year, I was doing very well and was walking about 3 Km per day.  My average oxygen saturation was between 92 and 94% but less during walking.

In August, all of a sudden, I started having shortness of breath and was unable to exercise. My oxygen level dropped to about 77%.  I immediately saw my pulmonologist who put me on oxygen and immediately admitted me to hospital, where I was given prednisone (cortisone) and an antibiotic as I was diagnosed with a viral infection with a secondary bacterial infection.  In hospital, I was constantly on 2l/min of oxygen which increased my oxygen saturation level to 95%.  After 3 days, the external oxygen was reduced to 1l/min and after the 4th day, removed altogether as my oxygen saturation had increased to 93% without any external oxygen.  On the 6th day I was released from hospital and went home.  I was told to use external oxygen at night for 2 weeks when sleeping, but not during the day.

My pulmonologist gave me a plan for the reduction of the prednisone over 20 days.  However, after about 10 days, (prednisone reduced from 30mg/day to 10mg/day), I became short of breath and my oxygen level dropped into the 70’s and I had to be on external oxygen all day and night.  Upon consultation with my pulmonologist, it was determined that I must still have an inflammation and would have to be back on the prednisone.

I was on the higher dose for 10 days and 30mg/day, stats back up in the 90’s.  I’m slowly reducing the prednisone by 2.5mg/week and am currently on 12.5mg per day.  Slowly getting better and trying to exercise. I’m on oxygen only at night when sleeping – now 1.5 l/min.  Meanwhile the prednisone has caused me to become diabetic and I have to inject insulin twice a day. Apparently, this is temporary until I’m off the prednisone.

During the whole time I continued to take Esbriet.  The good news is that my lungs have not deteriorated in the last year as per the latest CT scan.  I’m hoping that it’s a result of the Esbriet and I’m continuing to take it.  No liver or kidney problems and only slight nausea or headache after the morning dose.

I’d love to hear of similar experiences and any advice anyone can give from anyone’s own experience and knowledge.

Regards,

Cecil Zlotnick

 

 

[Camila Lopez]

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.