Prognosis,

[Servicer]

Any body out there still alive more than 5 years after Diagnosis of idiopathic pulmonary fibrosis who has been taken nintedanib (OFEV) I would be interested in their opinion of the drug,

[Servicer]

10/4. Good buddy.will

Do,

[Katinka46]

Hello Servicer

I can’t help with your query. But I too am interested in Nintedanob. I have a similar condition: Obliterative Bronchiolitis, which is fibrotic, scar tissue is slowly strangling the small airways. But I cannot be given that drug as it has not been OKed by NICE for my condition. Grr....

I am sure others with IPF will pop up and tell you about their experiences. Do you feel that it is helping you?

[Servicer in reply to Katinka46]

Been on it about 1 year if l am still here next year might be able to give an opinion it doesn't seem to me that it is slowing down the progression of the disease at the moment , but early days maybe,

[Katinka46 in reply to Servicer]

Thanks for getting back to me. In my case even if I were to be on it it would be difficult to assess the benefit. My degeneration is quite slow so we would never know, I think, if it was working!

[Rangitoto]

I am interested in your post as there doesn’t seem to be many on this site with IPF. I live in NZ where this disease is very rare so there are no support groups. I was diagnosed four years ago and although get very short of breath have resisted any medication because of the severe side effects. I want to enjoy the best quality of life I can for as long as I can and feel I am doing well for now. I have lung function tests and CV scans every six months to monitor the progress lung deterioration.

[Neville33]

Hi there...i would go to Mayo Clinic web site, to get more info...they also have a support group to help talk with others that have your condition...this is tough stuff to deal with...I have lung disease with difficult bacterias to kill...I have joined their support group..best thing I ever did...take care of yourself

[Rhonda2121]

Hi Servicer, I have been taking OFEV since it was first released, I’m thinking 4 1/2 years now. It is not a cure but has helped slow the progression. Side effects stomach pain, diarrhea, and nausea. None everyday but also never know when to expect any of them, they can come on rapidly. I’m still active playing golf 2-3 times a week scoring 85-95 and plenty of strength. I use my portable oxygen with a 7ft line and can swing with it. I try and keep my mind positive and body in condition. I cough a lot and get short of breath, but try to make the best of things. Waiting to here from Stanford to start progress of future lung transplant. All the best Rhonda

[Izb1 in reply to Rhonda2121]

Good to hear you are so postive with this terrible disease Rhonda and great to hear you are so active. I wish you all the very best Irene x

[Izb1]

Hi Servicer, I hope you get some replies to your query soon, I dont have this disease but imagine it can be very worrying. I do hope the drug helps you and you feel a little better soon. Take good care x

[Piperava]

Hi Servicer, My husband was initially diagnosed with COPD about 6-7 yrs ago but after many chest infections our GP wanted to investigate further so sent him for a CT Scan in 2015 which revealed that is was actually IPF and not COPD. He wasn't a candidate for the trial for what you are taking (not sure why) but was prescribed Mycophenolate instead which he has been taking since February this year....he now takes 3 tablets twice a day and so far, fingers crossed, it seems to have stabilised his condition. There was however a period when he felt quite nauseous so reverted back to 2 X 2 a day but is now back to 3 X 2 a day. I must add that he had a hiatus hernia operation in 1988 and subsequently cannot vomit, so to feel nauseous is not good at all. He also takes 5mg presinadone and use ambulatory oxygen. I agree there are not many people on this site with this condition so think it must be a rare disease. Do you keep a check on your says, we have a oximeter to check his levels when he has been walking but thankfully he recovers quite quickly. Hope this helps a bit.....I know he is not on the same tablets as you but think it helps to hear from fellow suffers. Hope you keep well.

[skischool]

Pirfenidone and nintedanib combined have now been trialed as a possibly better treatment of IPF,previously they were administered as one or the other as you probably already know.

Unfortunately my wife who had IPF passed away recently,but because of having suffered a stroke her IPF was never treated so none of the available drugs were offered.

i recommend that you ask your consultant about the new twin combination as it may be more effective in delaying the progress of your fibrosis.

Best wishes Ski's and Scruffy.

[BoomBaggy]

Hi Servicer, Welcome. I was diagnosed after X-ray, CT Scan, Broncoscopy and Lung biopsy nearly 6 years ago. Eventually I was accepted for Perfenidone and have been lucky enough to have few side effects. At first I found it hard to cope mentally - 50% die within 3 years!!! and then I joined a Breath Easy Group. I was hoping to find someone with the same condition but most people had COPD and appeared more ill than I was. To fight this disease I decided to get as fit as I could and mentally improved when living each day with a new vigor. I don't know if it was Perfenidone, fitness, or a combination of everything but for over 4 years I did very well 3 monthly lung function tests being pretty steady. This year suddenly a 10% drop in FVC and am now on Ambulatory oxygen. I have recently had a couple of major setbacks (recurrent Pneumothorax, Bullectomy and TALC) which have affected my confidence and Nintenadib has been mentioned as an alternative to Perfenidone. This may not really help but you may be on the best medication until the next breakthrough .

[Beachballs]

Hi Servicer

I have IPF and was diagnosed in 2016.

I started Nintedanib in November 2019 and all was well until February 2020, when I went down with a chest infection and developed an intolerance to this drug .

I am persevering with this , but sometimes due to vomiting, I have to have a break for a couple of days before going back on it .

I find that taking it in the middle of a meal helps.

As for your question regarding living past 5 years, I also asked my consultant that and he said , not in his experience.