1. < Lung Health

Esbriet side effects

Posted by maryflorida @maryflorida, Nov 5, 2021

My 75 year old husband just began taking Esbriet for pulmonary fibrosis. They start a person with one pill a day and gradually move up to 9 a day. He is now taking 2 a day, but is so fatigued he is in bed about 16 or 18 hours a day. If he only takes one a day, won't he get much sicker faster? His doctor said that his lungs have not gotten worse in the last year... he was only diagnosed 3 months ago, but she had his old records.
I don't know what to do. Diabetic too. He is eating right but blood sugar is running over 200 all the time. I hope someone can help me here.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 5, 2021

Mary - Fatigue is listed as one of the side effects of Esbriet, but I am not sure that it should be this severe early on. Also, as a diabetic, he undoubtedly take a number of other medications, some of which may be interacting with the new one. Also, were his kidney and liver functions tested before starting the new med?
If I were in your situation, my first call would be to the doctor, asking for a full evaluation of all the medications he is taking and their potential interactions. If that does not leave you feeling comfortable, maybe your pharmacist can help - often they are experts at figuring out where tie conflict is. Finally, every time my husband (who does not have PF) gets a new med or has one taken away, who diabetes meds generally need adjustment.
Let me know what you find out.
Sue

REPLY
1 reply
maryflorida | @maryflorida | Nov 5, 2021
In reply to @sueinmn "Mary - Fatigue is listed as one of the side effects of Esbriet, but I am..." + (show)
@sueinmn

Mary - Fatigue is listed as one of the side effects of Esbriet, but I am not sure that it should be this severe early on. Also, as a diabetic, he undoubtedly take a number of other medications, some of which may be interacting with the new one. Also, were his kidney and liver functions tested before starting the new med?
If I were in your situation, my first call would be to the doctor, asking for a full evaluation of all the medications he is taking and their potential interactions. If that does not leave you feeling comfortable, maybe your pharmacist can help - often they are experts at figuring out where tie conflict is. Finally, every time my husband (who does not have PF) gets a new med or has one taken away, who diabetes meds generally need adjustment.
Let me know what you find out.
Sue

Jump to this post

Thanks. His liver and kidney fct. were checked, and you are right. He is a kidney transplant patient (Mayo) also, plus diabetic. I am waiting for the dr to call back and will also check with his pharmacist.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 5, 2021
In reply to @maryflorida "Thanks. His liver and kidney fct. were checked, and you are right. He is a kidney..." + (show)
@maryflorida

Thanks. His liver and kidney fct. were checked, and you are right. He is a kidney transplant patient (Mayo) also, plus diabetic. I am waiting for the dr to call back and will also check with his pharmacist.

Jump to this post

Mary - introducing a med like this needs to be a team effort due to all his other meds. Sometimes a choice must be made to use less medication to get quality of life over quantity of life spent sleeping the time away. What are his wishes?
Sue

REPLY
1 reply
maryflorida | @maryflorida | Nov 6, 2021
In reply to @sueinmn "Mary - introducing a med like this needs to be a team effort due to all..." + (show)
@sueinmn

Mary - introducing a med like this needs to be a team effort due to all his other meds. Sometimes a choice must be made to use less medication to get quality of life over quantity of life spent sleeping the time away. What are his wishes?
Sue

Jump to this post

Yes, he felt better with one pill a day. She told him to stop altogether for 10 days and then get a lab test and start over. Thank you for the reassurance.

REPLY
renief | @renief | Dec 16, 2021

I have IPF. My doctor has me on Ofev, taken twice a day. It must be taken with meals or u could get nauseous and vomit. It also can cause diarrhea, which happens to me but I take one Lomotil a day and all is well. Definitely read up on Ofev and if u r interested see ur doctor.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 22, 2021
In reply to @renief "I have IPF. My doctor has me on Ofev, taken twice a day. It must be..." + (show)
@renief

I have IPF. My doctor has me on Ofev, taken twice a day. It must be taken with meals or u could get nauseous and vomit. It also can cause diarrhea, which happens to me but I take one Lomotil a day and all is well. Definitely read up on Ofev and if u r interested see ur doctor.

Jump to this post

Welcome, Renie. Good to know about your experiences on Ofev and the tip about taking with meals. How long have you been living with IPF?

@maryflorida, how are you and your husband doing?

REPLY
maryflorida | @maryflorida | Dec 22, 2021

He was on Esbriet for a few weeks, slept 18 hours a day and was exhausted the other six. She took him off, and he is feeling so good. But we know he will have to go on ofev when she sees him Jan. 17. Are there any suggestions for him when he starts the ofev? Also, our son is a medical officer (navy) and his masters thesis is on pulmonary fibrosis, trying to find things that will help his dad.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 24, 2021
In reply to @maryflorida "He was on Esbriet for a few weeks, slept 18 hours a day and was exhausted..." + (show)
@maryflorida

He was on Esbriet for a few weeks, slept 18 hours a day and was exhausted the other six. She took him off, and he is feeling so good. But we know he will have to go on ofev when she sees him Jan. 17. Are there any suggestions for him when he starts the ofev? Also, our son is a medical officer (navy) and his masters thesis is on pulmonary fibrosis, trying to find things that will help his dad.

Jump to this post

Mary, you may appreciate this related discussion where you can also ask members for their experiences with Ofev:
- What side effects did you have with Ofev (nintedanib) for IPF? https://connect.mayoclinic.org/discussion/olev-side-effects/

How fortunate to have a medical son specializing in pulmonary fibrosis.

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