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Nintedanib
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Strike 3 but not out!
Whether the
Nintedanib
is having an effect or not, I'm pleased that my lungs are holding on for the time being and I'm delighted that the campaign for
Nintedanib
to become available to ALL ILD patients with lung scarring at point of diagnosis has finally been successful.
Whether the
Nintedanib
is having an effect or not, I'm pleased that my lungs are holding on for the time being and I'm delighted that the campaign for
Nintedanib
to become available to ALL ILD patients with lung scarring at point of diagnosis has finally been successful.
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
1 year ago
Newbie with IPF
I was diagnosed with IPF in June this year and was started on
Nintedanib
in September but have had to stop it because it has effected my liver function. I have been told I might be able to start on Pirfenidone if my liver settles down in a few weeks or so.
I was diagnosed with IPF in June this year and was started on
Nintedanib
in September but have had to stop it because it has effected my liver function. I have been told I might be able to start on Pirfenidone if my liver settles down in a few weeks or so.
Hazel-mary
in
Living with Interstitial Lung Disease (ILD)
1 year ago
Our 3 month trip to SE Asia.
So, now it's the catching up with various things - monitoring bloods (for the
Nintedanib
) tomorrow, and lung function test on Thursday, prior to seeing the Consultant later in the month. Anyway, hopefully we can do it all again next year. Running away from winter suits us just fine.
So, now it's the catching up with various things - monitoring bloods (for the
Nintedanib
) tomorrow, and lung function test on Thursday, prior to seeing the Consultant later in the month. Anyway, hopefully we can do it all again next year. Running away from winter suits us just fine.
MMaud
in
Lung Conditions Community Forum
1 year ago
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OFEV (nintedanib)
Happy New Year! I’m currently on OFEV medication for Rheumatoid ILD and wondered if there was anyone else out there also on this medication that could share their experience / give me advice.
Happy New Year! I’m currently on OFEV medication for Rheumatoid ILD and wondered if there was anyone else out there also on this medication that could share their experience / give me advice.
Bonchops10
in
Lung Conditions Community Forum
1 year ago
Back on the transplant list
I just have to keep taking my prednisolone and
Nintedanib
and hope that they do their job of keeping the scarring at bay long enough to get me into that operation room for the transplant. Look after yourselves everyone and thanks as ever for all your support!
I just have to keep taking my prednisolone and
Nintedanib
and hope that they do their job of keeping the scarring at bay long enough to get me into that operation room for the transplant. Look after yourselves everyone and thanks as ever for all your support!
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
1 year ago
Weaning off prednisolne
im on Mycophenolate mofetil,
nintedanib
and prednisolone also oxygen 24/7...phew! Hospital are trying to wean me off prednisolone and i was doing ok got down to 7.5mg daily, then this terrible cough and breathlessness kicked in, now i cough and am breathless anyway but it was much worse.
im on Mycophenolate mofetil,
nintedanib
and prednisolone also oxygen 24/7...phew! Hospital are trying to wean me off prednisolone and i was doing ok got down to 7.5mg daily, then this terrible cough and breathlessness kicked in, now i cough and am breathless anyway but it was much worse.
cazza34
in
Lung Conditions Community Forum
2 years ago
Transplant waiting list imminent/Nintedanib feedback
I've also started on the
Nintedanib
which, touch wood, hasn't caused any nasty side-effects so far which is great.
I've also started on the
Nintedanib
which, touch wood, hasn't caused any nasty side-effects so far which is great.
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Bronchiectasis worsening
Have just read about a new drug called
Nintedanib
. Anyone know anything about this? I will try anything to relieve this condition. Thanks xx
Have just read about a new drug called
Nintedanib
. Anyone know anything about this? I will try anything to relieve this condition. Thanks xx
auntypank
in
Bronchiectasis Support
2 years ago
Pirfenidone side effects
I’ve been on
Nintedanib
for some time now but may be offered a switch to Pirfenidone when I next speak to my consultant. Has anyone had any side effects from Pirfenidone & how bad are they?
I’ve been on
Nintedanib
for some time now but may be offered a switch to Pirfenidone when I next speak to my consultant. Has anyone had any side effects from Pirfenidone & how bad are they?
Bee61
in
Living with Interstitial Lung Disease (ILD)
2 years ago
Nintedanib offers new hope as transplant recommendation approaches
Nintedanib
recently received Nice approval and is now available to ALL IPF and ILD patients provided that they meet the criteria.
Nintedanib
recently received Nice approval and is now available to ALL IPF and ILD patients provided that they meet the criteria.
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Docetaxel and Nintedanib. Any experience with these?
Hi. Has anyone had this treatment and can you let me know how you got on. Side effects etc?
Hi. Has anyone had this treatment and can you let me know how you got on. Side effects etc?
magstherunner
in
The Roy Castle Lung Cancer Foundation
2 years ago
The best of three evils: Which medication will cause me least grief?
APO-Mycophenolate, Esbriet (Pirfenidone), or Ofev (
nintedanib
). I unfortunately eat grapefruit for breakfast! Taking mycophenolate during a pandemic, seems foolhardy, and who is to say when the next pandemic will occur. I have a choice NOT to take this drug.
APO-Mycophenolate, Esbriet (Pirfenidone), or Ofev (
nintedanib
). I unfortunately eat grapefruit for breakfast! Taking mycophenolate during a pandemic, seems foolhardy, and who is to say when the next pandemic will occur. I have a choice NOT to take this drug.
Sclero_99
in
Scleroderma & Raynaud's UK (SRUK)
2 years ago
Mum - second-line treatment
I asked him about adding in
nintedanib
and, although he isn't convinced it will add much benefit, he has agreed to mum having it.
I asked him about adding in
nintedanib
and, although he isn't convinced it will add much benefit, he has agreed to mum having it.
flatterycat
in
The Roy Castle Lung Cancer Foundation
3 years ago
Consultant Meeting with Mum
I asked him about
Nintedanib
combined with Docetaxel and he said that he didn't think it would add any benefits for mum. I just don't understand why he is so pessimistic about it helping.
I asked him about
Nintedanib
combined with Docetaxel and he said that he didn't think it would add any benefits for mum. I just don't understand why he is so pessimistic about it helping.
flatterycat
in
The Roy Castle Lung Cancer Foundation
3 years ago
Medication Enquiry
Medication Enquiry Hi, would be interested to know if anybody else is on 300mg of soft capsules
nintedanib
? If so how are you managing?, many thanks
Medication Enquiry Hi, would be interested to know if anybody else is on 300mg of soft capsules
nintedanib
? If so how are you managing?, many thanks
Wolverton
in
Lung Conditions Community Forum
3 years ago
I am on Nintedanib for IPF. What’s best for breakfast?
I am on
Nintedanib
as I am an IPF patient and am type 2 diabetic. I take my medication with breakfast. I have fruit & porridge for b/fast but sometimes get diarrhoea. Any other recommendations for breakfast please to try to avoid the diarrhoea?
I am on
Nintedanib
as I am an IPF patient and am type 2 diabetic. I take my medication with breakfast. I have fruit & porridge for b/fast but sometimes get diarrhoea. Any other recommendations for breakfast please to try to avoid the diarrhoea?
Leenane
in
Lung Conditions Community Forum
3 years ago
I am on Nintedanib and am type 2 diabetic. I have fruit & porridge for b/fast but often get diarrhoea. Any other recommendations please?
What’s for breakfast?
What’s for breakfast?
Leenane
in
My MSAA Community
3 years ago
coming off medication
hi lv just com e of my medication
nintedanib
, as the side effects were very bad ,l lost one stone in a month , but were do l go now is the question, can you help with some answers . take care Rod Glover Rodders 1941
hi lv just com e of my medication
nintedanib
, as the side effects were very bad ,l lost one stone in a month , but were do l go now is the question, can you help with some answers . take care Rod Glover Rodders 1941
rodders1941
in
Lung Conditions Community Forum
4 years ago
Medication for IPF
Will ask again about you having
Nintedanib
or the other medication for IPF! Why can’t I have it ? I suspect my age 76 or money! Too expensive I have paid all my subs so don’t see the problem 😡😡🤬🤬
Will ask again about you having
Nintedanib
or the other medication for IPF! Why can’t I have it ? I suspect my age 76 or money! Too expensive I have paid all my subs so don’t see the problem 😡😡🤬🤬
Looseloafers
in
Lung Conditions Community Forum
4 years ago
l need advice
hi l,v been on
Nintedanib
for 6 weeks ,for the past week lv developed diarrhoeaq does this last now all the time or is it just occasional occurrence.? l have I P F. take care .rodders 1941
hi l,v been on
Nintedanib
for 6 weeks ,for the past week lv developed diarrhoeaq does this last now all the time or is it just occasional occurrence.? l have I P F. take care .rodders 1941
rodders1941
in
LUPUS UK
4 years ago
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