claudia-sundberg
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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 needed to be out for the lung biopsy I had to prove to corporate that I could do the job. I even had to do that when I sprained my ankle! I need to keep myself busy so I don’t have too much time to dwell on the IPF and it puts into perspective for me that there are people that are worse off than I am. I am on Esbriet and have been able to manage the side effects quite well. I’m hoping to keep working for some time.
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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 lobster dinner and all the other seafood items I can have that are so fresh.
I think the partly the stress of being in a 20 ft rv and moving every few days probably helped contribute to the stomach problems. My husband thinks I am a much happier person right now!
Take care,
Claudia
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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 being on it! The stomach issues have disappeared and so has the miserable feeling at night. The cough seems to be better also. Go figure!
I have not contacted my pulmonologist about this. She responded 2 weeks after my liver function test to let me know it was fine. Really. I already knew that.
So my question about the drug is why would you develop these bad side effects after being on it for 2 months? I thought they would get better.
Charlene, we will be spending 2 weeks traveling the Maritime Provinces of Canada and will be traveling home to MN through Canada the end of September.
Claudia
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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 normal except one. On one my AST level was high and my pulmonologist thought maybe I should cut back if it continued. What I found out is AST is not only in the liver but also in muscles in the body so any injury could make that number higher. I had twisted my foot and as it recovered the AST levels went back to normal. I, too, panic about the sun but I now have the new habit of applying SPF 50 sunscreen in the morning and afternoon if I have to be outside.
I do have a question for the group. We are experiencing high pollen alerts and I am wondering if this affects breathing. I am trying to remain indoors most of the time just in case. Anyone have any issues with this?
Claudia
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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 come back. I had the procedure done in MN and they actually sent the slides to U of Michigan at Ann Arbor because my doctor felt they were a great resource. So with that I got 2 opinions.
I want to thank everyone whose responded and I’m happy to have found people who “get it”. -
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 isssues and fatigue. Right now my case is mild. I am not on O2 and have not done any pulmonary rehab. I am part of Genutech’s Inspiration program and they have sent me some helpful tools like a tracking journal and pill container. I find I get more help and assistance from the specialty pharmacy pharmacist than I do from the nurses at Genutech. I have not heard from my doctor since starting the medication and don’t go back until the end of September. I really appreciate this forum for information and seeing what helps other people. Thank you Charlene.
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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 take about 2 weeks for the diarrhea to stop. I started titrating back up in September and at this point I have no stomach pains but I do have the friendly diarrhea back again. The diarrhea is at this point pretty predictable so I know when it’s coming. Lately, though, I have been getting headaches and sinus issues that are not a cold. It might be the change of seasons here in MN with our January temps in November.
I am ok with the side effects at this point and do not plan on stopping it. I hope it is helping.
Claudia