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Jojo posted an update 2 years ago
Can anybody advise what an exacerbation is with ipf.
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Allan Byron and
Jojo are now friends 2 years, 7 months ago
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Jojo replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 11 months ago
I have also had major diarrhea nausea and vomiting. It was recommended that All Bran be eaten or a supplement. It does help, the sublingual Imodium does help as well. Vomiting is intermittent and you never know when it will occur maybe once or twice a week. I did go down to 100 mgs twice a day 150 was too much to handle, it is frustrating bu…[Read more]
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Jojo posted an update 2 years, 11 months ago
Well hello all. I have been taking Ofer since Dec 26/19. Two pills a day each 150 mgs. January and February went not too bad however by March and April the diarrhea nausea vomiting and fatigue got to me. April my dose lowered to 200 mgs per day. I still experience diarrhea nausea and vomiting about 8 x’s A day. I have been so overwhelmed I had t…[Read more]
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Hello Jojo, many of our members have had Ofev experiences similar to yours. There are topics related to your experiences. Hopefully a few members will chime in as well. Take care, Mark
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Jojo posted an update 3 years, 6 months ago
@mark-koziol thanks for your info on Ofer, it appreciated 🙂
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You are welcome!
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Jojo posted a new activity comment 3 years, 6 months ago
Hi Mark, thanks for replying. I might have confused the issue. I have had all my tests etc including a visit to surgeon who explained biopsy procedure if needed. My respirologist in Toronto advised yesterday that there was no need for a biopsy as all tests and scans have clearly and definitively show if. I have been given the choice of which of…[Read more]
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Hello Jojo, I was also given the facts about each medicine. They basically do the same thing but the side effects are different. I chose the Ofev. I like to be out in the sun and if I took Esbriet it would severely affect my sensitivity to the suns rays. This has to be your choice and I am glad your doctor gave you the options. Some people can’t t…[Read more]
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Jojo posted an update 3 years, 6 months ago
Have been diagnosed with ipf. Now having telemedicine call with university health network Dr and not sure what to expect I’m in early stages and would like feedback on how long I may have to wait to try Ofer or eisbret. Or dr might Oder lung biopsy has anyone gone thru this procedure where they take two wedges from lung area for diagnosis. P…[Read more]
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Hello Jojo, from recollection I think you have to be diagnosed with moderate stage ipf in order to be prescribed. I did have the lung biopsy and several pieces of my lungs were extracted. I recovered very well from surgery. I was discharged on my third day and did not suffer any type of complication. If you have your ipf diagnosis I am wondering…[Read more]
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Hi Mark, thanks for replying. I might have confused the issue. I have had all my tests etc including a visit to surgeon who explained biopsy procedure if needed. My respirologist in Toronto advised yesterday that there was no need for a biopsy as all tests and scans have clearly and definitively show if. I have been given the choice of which of…[Read more]
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Hello Jojo, I was also given the facts about each medicine. They basically do the same thing but the side effects are different. I chose the Ofev. I like to be out in the sun and if I took Esbriet it would severely affect my sensitivity to the suns rays. This has to be your choice and I am glad your doctor gave you the options. Some people can’t t…[Read more]
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Jojo posted a new activity comment 3 years, 6 months ago
After many many tests my internal medicine doctor has advised ipf diagnosis. She also set me up with a surgeon to discuss biopsy, but I really don’t want to have this done if not absolutely necessary. I have a telemedicine appointment with Dr Shapera thru University Health Network as I live far from Toronto but in Ontario. So would anybody know…[Read more]
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Jojo posted a new activity comment 3 years, 11 months ago
Thanks Marianne appreciate the info. I am in all the tests stage. I had a ct thorax scan done which my Dr said showed IPF. But he now ordered a HIgh Resoltion CT Scan and a PTF Pulmonary Function Test in the next two weeks so I guess I’ll know even more then. I have had the dry hacking cough some breathlessness fatigue for over a year and half s…[Read more]
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Jojo – Yes it is very important to get the right diagnosis because different diseases are treated with different medicines. Best of luck to you. I had the dry hacking cough for 5 years. Primary care doctor kept telling me it was acid reflux until I went back in September 2018. Then I was sent to a pulmonary doctor. I went out for a second…[Read more]
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Jojo posted a new activity comment 3 years, 11 months ago
Thanks Charlene! This is so new to me that it’s a bit scary.
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No problem @jojo, I remember the early days of my diagnosis and how scary and confusing everything was. Be gentle with yourself during this tough time, and feel free to reach out and ask us any questions. This is a very supportive and caring group of people who will do everything they can to help you. Hang in there, and know that we’re all here…[Read more]
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Jojo posted an update 3 years, 11 months ago
Can anyone tell me if high resolution ct scan is enough to be diagnosed with IPF.
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Hi @jojo, yes, from my understanding this is the primary tool used to diagnose IPF. Can anyone else confirm this?
Charlene.
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Thanks Charlene! This is so new to me that it’s a bit scary.
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No problem @jojo, I remember the early days of my diagnosis and how scary and confusing everything was. Be gentle with yourself during this tough time, and feel free to reach out and ask us any questions. This is a very supportive and caring group of people who will do everything they can to help you. Hang in there, and know that we’re all here…[Read more]
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After many many tests my internal medicine doctor has advised ipf diagnosis. She also set me up with a surgeon to discuss biopsy, but I really don’t want to have this done if not absolutely necessary. I have a telemedicine appointment with Dr Shapera thru University Health Network as I live far from Toronto but in Ontario. So would anybody know…[Read more]
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Jojo became a registered member 3 years, 11 months ago
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Thanks for joining the PF forums Jojo. Welcome!
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Hi @jojo, here is a good link for explaining what an IPF exacerbation is (although, the severity can differ for each person and depending on what the trigger of the exacerbation is). I hope it helps:…[Read more]