@claudia-sundberg
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Claudia Sundberg replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 2 months ago
Hi Michael,
I just wanted to share some of my journey with Esbriet. I started it at the end of June and was on it for for 3 months. At that point we were on a 47 day vacation and I was having bad stomach pains and diarrhea. I figured I would stop taking it so I could enjoy the vacation. The stomach pains disappeared by the next day but it did…[Read more]
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Claudia Sundberg replied to the topic How to Decide When to Stop Working with Pulmonary Fibrosis. in the forum Employment & Pulmonary Fibrosis 4 years, 3 months ago
I retired in 2014 but was not diagnosed until 2018. However, before I got my diagnoses I went to work part time for an assisted living as a server in the dining room. My mother had been a resident there and had passed away and I really missed the residents there. So far I have been able to work with only minor fatigue although when I have ne…[Read more]
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Claudia Sundberg replied to the topic Most common questions asked about Esbriet in the forum Esbriet (Pirfenidone) 4 years, 5 months ago
Hi Charlene
We will be in Nova Scotia September 3-8, the early part of the week in Halifax and the end of the week in Cape Breton. We are touring with an rv group of 25 units. So if you see a lot of rvs it’s probably our group. With the side effects of Esbriet causing all the stomach issues, I decided I was not going to give up having a lo…[Read more]
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Claudia Sundberg replied to the topic Most common questions asked about Esbriet in the forum Esbriet (Pirfenidone) 4 years, 5 months ago
I had been on Esbriet for 8 weeks and we are traveling on an extended trip and I had developed stomach pain and diarrhea and really feeling miserable by the end of the day and the coughing was getting worse.
Because of that I decided to take a break until we return home and I know I will have to titrate back up again but I feel so much better not…[Read more]
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Claudia Sundberg replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 5 months ago
Hi Diane
I have been on Esbriet for 8 weeks now and have learned several things. I always make sure I take my pills one at a time throughout the meal and to make sure there is protein in each meal. Apparently that slows the absorption of the Esbriet making it easier on the stomach. I have had several liver tests and they have all been no…[Read more]
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Claudia Sundberg posted an update 4 years, 6 months ago
Hi Charlene
In regards to the HRCT scan I had one scan done in 2016 without dye and the other this year with dye. What I found interesting was no one said anything about the ground glass appearing on the 2016 scan and how they say it has increased in 2018. I think I would have wanted to know that. Even though I had the scan my doctor said the…[Read more] -
Claudia Sundberg replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 6 months ago
Hi Charlene
I can address the lung biopsy by saying it was an experience. I had 4 holes in my side one was for the chest tube the others for the camera and retrieval instruments. I spent 3 days in the hospital. What no one told me at the time was the numbness and tingling from the nerves being cut. Almost 3 months out it is finally beginning to…[Read more] -
Claudia Sundberg replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 6 months ago
Hi, I am Claudia and I was diagnosed with IPF in May of this year after having an unexplained cough for 6 months.I had every blood test you can have to rule out a cause. A VATS lung biopsy showed UIP. My pulmonologist only suggested Esbriet and I started that in June. I am now in my 8th week and have only a few side effects on it-some stomach…[Read more]
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Claudia Sundberg joined the group
Research and Development 4 years, 7 months ago
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Claudia Sundberg changed their profile picture 4 years, 7 months ago
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Claudia Sundberg's profile was updated 4 years, 7 months ago
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Claudia Sundberg became a registered member 4 years, 7 months ago
Hi @claudia-sundberg, thanks for getting back to me and sharing a bit more about your experiences. I can imagine it was frustrating to hear of the ground glass increasing this year compared to 2016, even though you didn’t even know about it 2016. I agree, in that, I would have wanted to know that as well!
Good tip re: bringing a water bottle…[Read more]