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Ida Anker replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 1 year, 4 months ago
I was diagnosed with IPF in Oct 20, and started OFEV in jan 21. I believe the only reason why the doc reccomended OFEV over Esbriet was the number of pills daily (2 vrs 3) I think he mentioned early stage, however later on another doctor said moderate as my gas diffusion (DLCO) is at 44 % only, whilst lung capacity still 70 %. No side effect for…[Read more]
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Ida Anker replied to the topic Started Ofev…one week in now in the forum Ofev (Nintedanib) 1 year, 10 months ago
Hi all, maybe this is a Q to be posted elsewhere, but just curious about rules regarding being on the transplant list abroad. In Norway you are off the list after the age of 65, and in order to be ON the list you have to be so sick that expected life time is less than 2 yrs. Sees to be different from country to country.
BR Ida from Norway
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Ida Anker replied to the topic Increased Throat Clearing in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago
I started Ofev in January 21 after being diagnosed with IPF in October 20. I believe my cough has disappeared more or ledd, but the throat clearing is still there. Furthermore, dryness in the throat is also a typical symptom for me. I drink loads of water but it is still there. My next check up is schedulded to be April 19th, so a bit worried if…[Read more]
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Ida Anker replied to the topic Life span in the forum Diagnosis Information and General Questions 2 years, 3 months ago
Thank you Don for a wonderful, uplifting post. I especially liked the quote “be a blessing for other”. I will try to do the same, and will keep Your Words in my heart. God bless you. Best regards, Ida
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Ida Anker replied to the topic Life span in the forum Diagnosis Information and General Questions 2 years, 3 months ago
Thanks for asking the question Pam, and for all uplifting comments. The 3-5 year is the first information you get after being diagnosed, both online and also all information from the hospital. It`s so scary so getting balanced information is very helpful. I try to keep a positive attitude, eat properly and work out as much as I can. This group…[Read more]
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Ida Anker posted a new activity comment 2 years, 3 months ago
Dear Sharon, so sorry to hear that you have this awfull diagnose aswell. I’m on week 5 With Ofev, and happily still no side effects. Lung transplant is currently no issue for me, as the Doctor says I’m to healthy at the moment. DO you have less lunge capacity? I’m currently at 70 % and doing well except climbing hills. Lets stay in touch. Take…[Read more]
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Ida Anker posted a new activity comment 2 years, 4 months ago
Thank you so much. This is of great help to me:-)
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Ida Anker replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 2 years, 4 months ago
Many thanks for admitting me to the Group. I was diagnosed With IPF in Oct 20. A chock after having trouble with breathing for approx 2-3 years. I’m 61 and located in Norway. I started on OFEV 150 mg a month ago, and have not experienced any side effects yet. First liver status was good aswell. After being in chock for a month I’ve been woriking…[Read more]
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Ida Anker became a registered member 2 years, 4 months ago
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Hi Ida, thank you for joining your pulmonary fibrosis forum. Welcome!
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Thank you so much. This is of great help to me:-)
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Hi lda,
Reading your post was as if I had almost wrote it.
I was diagnosed October 2020 and I will be 61 this April. Been experiencing breathlessness for a few years but always put it down to my bad back.
I was on Ofev 150 twice a day but now on 11 twice a day because I was experiencing stomach cramps and diarrhea through out the day. It has eased…[Read more]-
Dear Sharon, so sorry to hear that you have this awfull diagnose aswell. I’m on week 5 With Ofev, and happily still no side effects. Lung transplant is currently no issue for me, as the Doctor says I’m to healthy at the moment. DO you have less lunge capacity? I’m currently at 70 % and doing well except climbing hills. Lets stay in touch. Take…[Read more]
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Hi lda,
Reading your post was as if I had almost wrote it.
I was diagnosed October 2020 and I will be 61 this April. Been experiencing breathlessness for a few years but always put it down to my bad back.
I was on Ofev 150 twice a day but now on 11 twice a day because I was experiencing stomach cramps and diarrhea through out the day. It has eased…[Read more]
Dear Sharon, so sorry to hear that you have this awfull diagnose aswell. I’m on week 5 With Ofev, and happily still no side effects. Lung transplant is currently no issue for me, as the Doctor says I’m to healthy at the moment. DO you have less lunge capacity? I’m currently at 70 % and doing well except climbing hills. Lets stay in touch. Take…[Read more]