IPF - Nintedanib

Hi folks, I am new here and this is my first post.

I was a relatively fit male of 47 until last autumn when I started to feel tired and have an annoying constant cough. So I finally listened to the wife and went to see my GP in October. After numerous tests, I had a lung biopsy in Feb 2017, two weeks later I was diagnosed with having IPF. Everything is just so scary at the moment with lots and lots of information coming at me from every direction. My FVC is 56 %.

Last week i started my medication nintedanib.

I was wondering if those of you out there who have IPF and / or are taking nintedanib could offer some real life advice on this condition and how its effects you I have read quite a lot of stuff but still feel I know nothing.

Many thanks in advance.

Ian

18 Replies

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  • Welcome to this site Ian. Sorry I don't know much about your condition, mine is COPD. It takes time to come to terms with the diagnosis . There are plenty of people on here who can help and support you . Time to take care of yourself. . Hope you let us know how you are doing. Joyce

  • Hi Ian you'll find a group on Facebook will give you more information about treatment for I p f it's under pulmonary fibrosis uk everyone has the condition and share their progress but welcome here although I have I p f and enjoy both groups. Good luck

  • Cheers will check out facebook group.

  • Hi Ian, I was diagnosed in 2014 after many tests kill you was extremely fit. The best advice I can give you is to ask your hospital to put you on pulmonary Rehabiliation this will teach you to exercise within your limits. I still cycle, swim, and visit the gym to keep as healthy as possible. Find a support group to talk to other like minded people. I am on the other drug Pirfenidone and this has kept me stable for over two years, and Nintenanib I have been told is just as good.

  • Thanks for the valued information. I was put on Nintenanib as I was told you needed to apply sun cream constantly with Pirfenidone.

  • That is true, I became allergic to the sun cream after two years of use, I now have purchased UV protection clothing wear hats and keep in the shade, and have shown no reaction to the sun. Both medications have side affects but they are potentially slowing down a serious illness. Hope you get on with Nintenanib a lot of people in our support group are on it and the only side affects some have reported is diarrhoea..

  • Welcome to the site Ivan, sorry can't help you on this one, but I'm sure someone on here will be able to. Hope you are doing ok. Please keep in touch and let us know how you are. Take care and have a good day 😊 xxx Bernadette

  • hi dude i had ipf now i dont due to lung transplant but for chuffs sake dont let that scare you 1 the best thing i can tell you is train train train all the drugs are fine but keeping fit and streaching those lungs will keep you going for years n years im not going to lie tplant is the cure for ipf and thats not that bad dude i have a normal is life now just watch what i eat n drink and lots of training [sigh] oh yeah the training the more u do the longer you last as you are now look at walking 2 mile a day get a treadmill for winter also it will set you up if they say u need tplant the fitter the easyer old saying train hard fight easy so true in this case i did not walk enough and went down in about 5 years ive met peaple who have done 15 plus there is lots more to tellif you want to know ask dude ill tell you anything ill tell it like it is not candy coated anyway bye for now

  • Welcome to the site Ian , can't help you on your paticular illness have COPD/Asthma myself, but other members will help you out when they see your post OK.

  • Don't have IPF so can't help Ian, but would just like to say hello and welcome.

  • I'm COPD/Asthma too - there's a lot of it about! Welcome anyway and I hope you find help.

  • Hi.. my husband was diagnosed with IPF last year and went on Nintedanib this year. He has found the pulmany rehabilitation helpful, and we joined a local IPF support forum. One of the biggest issues you face, in my humble opinion, is not getting a chest infection.. this leads to an exacerbation.. i.e worsening scarring/ fev. My husbands fev, when he was diagnosed was 92%. He had a chest infection last August, and his fev is now 80%. They put him on the wrong antibiotics... they were resistant to the particular strain of infection. This was discovered by him having his sputum tested. His fev dropped to 62% whilst he had the infection. They say when you have an exacerbation, your lungs never recover back to where they were. My husbands haven't. So lesson learnt for us.. if he does get another infection, god forbid, we'll ask for a sputum test to make sure we get the right antibiotic.

    He hasn't had the flue jab, he is too scared. But he has his pneumonia jab, and Shingles jab next week. Very best of luck... stay positive, healthy, and keep exercising .

  • Thanks for the advice and support given. As i have said I have read lots of stuff but think its better to discuss issues with real people who are unfortunately suffering like me or love someone who has this condition. Staying positive and keeping to my exercise plan are important to me.

    Thanks all

    xxx

  • There will be someone who can help along soon, Ian.

  • Hello Ian and welcome, have you been to the BLF website? They've been updating their information on IPF. You could also speak to one of the nurses on the Helpline - they're very good and well-informed and could answer your questions. Office hours, Monday to Friday 03000 030 555.

    Keep in touch because although there are several lung conditions our symptoms overlap, and the problem solving can be shared.

    The early days are always difficult. Look after yourself, Sue x

  • Hi Ian1369 "Welcome" to the forum.

    I like yourself was relatively fit and only had a none productive cough when I first went to the doctors. It came as quite a shock to be told that I had IPF.

    It took some time learning to cope but the support and knowledge gained from joining this forum was immeasurable. I also have a very positive attitude and that makes a vast difference in your own wellbeing and how you manage your condition.

    I was originally diagnosed with IPF but it was found to be caused by my immune system and I am now receiving treatment to stop any further damage.

    I see from the replies you have had that you have already been given some good advice and I don't think I can add more to it except, don't suffer in silence. If you have any concerns, questions or just want a bit of support there will always be someone here willing to help.

    Take care.

    John

  • Hi Iain

    Sorry you also have this condition and facing same problems that we all have in finding out good information on this awful disease. Glad you are starting to think about how the disease will affect you as that is probably one of the most important things you can do to help yourself.

    As far as advice goes I would have a look at the excellent article on the Inspire forum (see Link below). The Inspire forum has a lot of members and, although a lot of the info is aimed at American patients, there is so much useful info from people with huge experience of IPF that, like this forum, it is a must join forum if you have not done so already. Also have a look at the recent patients guide from Pulmonary Fibrosis News. It really is an excellent introduction to IPF and other ILDs most everything you need to know in one article.

    For me the most important things I have learned were to get a pulse oximeter (discovered tests in doctors office complete waste of time !!), treat my GERD (never knew I had it), keep accurate records of how disease progresses (everything - doctors results, your own notes) and prepare extensively (days!!) for every meeting with my consultant. Probably the most useful thing for me has been to develop my own disease monitoring test (exercise tests coupled with pulse oximetry) as that maps the decline in my condition much more accurately than any lung function test and is something I can do every day or few days and helped pick up an exacerbation early (and arrhythmias).

    One of key things to address is getting referred to an IPF expert if possible. In UK, most doctors work loads are so ridiculous that they can only spend a very limited amount of time on you (20 mins every 3 months if you are lucky) and there is also a good chance that you are not even being treated by an IPF expert or someone with much experience of IPF so the more knowledge your doctor has the better. If you cannot get referred then you must work extra hard to take control of your own care so that you can help doctors keep on top of your condition.

    As to how IPF affects you, everyone is different though in my case it seems to have been like aging from 55 to 100 in just 4 years. Every year I look back at what I was able to do the previous year (walking, working, eating etc) with amazement at how things have declined. Worse still, when I try to plan ahead and think of how the disease might affect me next year (e.g. perhaps I'll need oxygen when showering) I get an exacerbation and a few weeks later discover that I need the oxygen right now and should be worrying about the next stage !!. Hate to end on such a pessimistic note but feel it's best to at least outline the worst case scenarios rather than ignore them. In reality many folk have a much slower decline and (on Inspire website) you will find people who have had disease for 15 years and still functioning quite well. The new medicines offer some real hope as well. I was a drug researcher for the past 30 years, including brief spells working on PF, and Nintedanib (and Pirfendione) seem like a fantastic step in right direction. Just hope you are coping with side effects.

    Here are the links I mentioned.

    Inspire article and site

    inspire.com/groups/living-w...

    Patients guide

    pulmonaryfibrosisnews.com/2... publishes-online-information-guide-pf-ipf/

    Direct link to Patients guide

    pulmonaryfibrosis.org/docs/...

  • Many thanks for the valued response to my query on the website mentioned as I write this reply.

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