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.
January 6, 2022 at 10:11 pm #30704Marilyn CellucciParticipant
Charlene and David,
Why wait until the FVC is 80. Why aren’t the drugs started when your lung function is better?
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 #29939Christie PatientModerator
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)
January 5, 2022 at 12:00 pm #30688Wendy DirksParticipant
Hello, All –
I had an appointment with my consultant yesterday and I am one of the patients who will be eligible for Ofev as soon as it it rolled out for people with non-IPF interstitial lung disease next month. He told me that there are so many patients in need of it that they are still working out the logistics of getting everyone started and monitored appropriately.
I’m just worried that it’s going to be too late to do much for me. My illness has progressed significantly over the last month or so and I am so breathless after walking a few steps that it is scary. I’m on oxygen 24/7 and have been prescribed lorazepam to help with the severe attacks of breathlessness.
I spent the holidays wondering if they were my last. I’m receiving wonderful palliative care but it’s still pretty daunting to think how close I might be to the end of my life. My consultant was very evasive when I questioned him and simply wanted to talk about Ofev.
I’ve been reading the thread about Ofev and seeing all the comments about side effects. I’ve got my fingers crossed but the future seems very uncertain at the moment.
January 7, 2022 at 2:17 am #30705Ann GarnerParticipant
My husband has suffered severe weight loss due too the ofev. He has had numerous tests to rule out anything else so we are left using Ensure and tempting the appetite as best we can. He takes 1 Lorazepam each morning and is currently not having diarrhoea problems. All best wishes to everyone suffering with this awful disease.
January 6, 2022 at 10:13 am #30696Ann GarnerParticipant
I have put a reply out there but unfortunately not here. Hope you can find it on the Forum. All best wishes.
January 6, 2022 at 3:51 pm #30701Bernard McKennaParticipant
I am in the UK and what David above states is correct at present. However if a person comes off Nintedanib (OFEV) before reaching the 50% FVC and switches to Pirfenidone (Esbriet) they can continue on Pirfenidone which is happening with myself. I think it may also occur even if you go below 50% that you can switch to Pirfenidone (Esbriet).
The National Institute for Health and Clinical Excellence (‘NICE’) is deciding this month (January) whether people can still continue to receive Nintedanib (OFEV) if their FVC goes below 50%.
As my current decline has been quick I am also going to be evaluated for transplant but the number of transplant operations I understand have declined because of covid. In the Republic of Ireland they sadly recently had a man who came to the Mater Hospital in Dublin for his transplant and the lung was ready for transplant but there were no intensive care beds because of the number of covid patients in ICU so the transplant did not take place.
I hope this helps.
Best wishes to all
January 11, 2022 at 9:52 am #30715Jeff Taylor-JacksonParticipant
Just to re-iterate what Bernard and others have said, NICE have approved Nintenidab for use by anyone at any stage of their progression.
It will become available on the 14th February 2022.
I suggest contacting your consultant about this.
I have already – and I will do again after the 14th next month!
January 11, 2022 at 3:13 pm #30719John KaneParticipant
Teri, is your paleontologist looking for Jurassic or Mezazoic requirements?
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