July 6, 2020 at 1:48 pm #24855Teri BrownParticipant
I have talked with some people in UK who can’t get Ofev until their lungs are at a certain level. My paleontologist would love to know what those requirements are. He knows they exist, but not specifics. Anyone??
July 6, 2020 at 5:16 pm #24863
Thanks so much for writing! So sorry I don’t have much to contribute here, as I am neither in the UK or US. I know there are some members of the UK on here though, who I hope can help and can share their experience of using Ofev in the UK. Let me know if you don’t get any responses, and I’ll see if I can obtain any more information for you from a few physicians I work with regularly through board of director/volunteer positions. I’m not sure what they will have to add, but I can always try for you 🙂
July 7, 2020 at 3:32 pm #24880
Hi @terib3294 ,
A wonderful forums member by the name of David sent me an email regarding his experience with Ofev in the UK. He shared with me the following: “Ofev in the UK. They will only prescribe Ofev when the FVC is at 80 or below”. Does this sound similar to your experience?
July 9, 2020 at 4:47 pm #24913David SwainParticipant
Hi Charlene. I’m in UK. I’m went on OFEV last October and was told that both OFEV and Esbriet can only be prescribed if FVC is less than 80%. In addition both drugs will be stopped if there is more than 10% decline in a year, or FVC falls below 50%. If one of them doesn’t work or cannot be tolerated, you can be switched to the other, as long as FVC is still above 50%. I hope this helps.
July 10, 2020 at 9:03 pm #24926
So nice to hear from you – thank you for sharing your experience with Ofev in the UK. I’m sure @terib3294 will find your response helpful too!
For patients with an FVC under 50% who have to come off Ofev or Esbriet, are they then evaluated for transplant (if they qualify)?
Thanks for sharing and I hope you’re doing well.
September 13, 2021 at 4:14 am #29923John BrennanParticipant
Hi having reached the stage of ambulatory oxygen 3 months ago after being diagnosed 5 years ago and learning to live with disease now my weight seriously down. DIETICIAN advised bulk stuff but morphine intake seems to have completely killed appetite. Anyone got any suggestions please?
September 14, 2021 at 12:58 pm #29939ChristieModerator
Hi John @maxpepper, sorry to hear you are struggling with maintaining weight. Adding in small portions of high calorie foods like nuts, healthy oils like avocado, coconut, etc. into your daily meals is a good way to increase your calorie intake. Supplements for weight gain, like ensure, and similar shakes are also an option, but they are kind of thick and gross if you don’t have much of an appetite anyway. Whole foods are better if you can manage that. As for appetite itself, depending on where you live, medical marijuana might be worth looking into. It can cause an increase in appetite without interfering with your medications. Just a thought. 🙂 As an aside, this column over on cystic fibrosis news might be of interest to you.
September 14, 2021 at 5:45 pm #29944Marilyn CellucciParticipant
I have severe GI problems in addition to my IPF. Starting at about last Christmas, I started losing weight, unintended. I lost over 40 pounds in less than six months. My GI doctor thought I had a malignancy and was tested with everything. No malignancy was found. So he is dumfounded as to why I am losing weight. I mentioned to him my lung disease and he mentioned it to my lung doc. She said I would be losing weight at the end of my life when I couldn’t even have the energy to eat, not at the beginning of my journey. I still think it is because of the lung problem. I have been put on high dose steroids, and of course, I am ravenous and the weight is holding right now. But this is only masking the problem. I would assume you have the weight loss because of the disease. I don’t agree with my pulmonologist. I know she is correct concerning the weight loss at the end, but I am odd anyway so I guess I am having it now.
September 16, 2021 at 10:34 am #29957Hans M. FinkParticipant
Hi Marilyn Cellucci,
I have the same weight loss issue as you. Also, I would not accept the view of your Pulmonologist but am convinced that the weight loss is directly related to the OFEV medications. Have not yet asked a nutritionist for advice but will soon.
Hans Fink (in Canada)
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