Looking for Advice re IPF .

[Jaxleo]

Hi , I am a 66 year old male living in the UK , I have just been diagnosed with IPF and have been offered Nintedanib to start early in 2020 after my hernia Op . I would like to hear from anyone who can offer any advice regarding the side affects of Nintedanib and how long do they last , I would like to hear from anyone who may know if there are any benefits in using CBD oil to help with IPF , I look forward to any reply , all the best J .

[Tweetie13]

I have IPF I had Nintedanib 150mg unfortunately I had to stop taking it due to diarrhoea and vomiting. They tried giving me a break then starting again on 100mg but I had the same response.

I dont know about CBD oil so I cant help on that topic, sorry.

[Jaxleo in reply to Tweetie13]

Hi , thanks for your reply , I am going to do some research on CBD oil and I am speaking to my nurse later today to review the starting date of the meds , I will let you know if I can find out any info , How do you manage your IPF at the moment and how long is it since you were diagnosed , keep well and I look forward to speaking again soon all the best J .

[Tweetie13 in reply to Jaxleo]

Hi, I was diagnosed in 2012, I'm 58 yrs old. I'm currently on Oxygen on exertion. I've recently had a 3 day assessment for a transplant I'm currently awaiting the decision following an outstanding test.

I hope you're successful with Ofev, I'm left with boxes of it, what a waste. I forgot to mention it also affected my liver.

The only thing I would suggest is that you eat well when you take it.

[Jaxleo in reply to Tweetie13]

Hi , I hope that you are successful with the transplant and don't have to wait too long . I just spoke to my nurse and she is going to hold the Meds until at least the new year when I should hopefully be fit enough after a recent bout of food poisoning which has left me very week , I will take your advice and make sure that I eat well when I start the meds , J .

[rustydexter in reply to Tweetie13]

I tried nintendanib a couple of years ago but it caused diarrhoea and vomiting that just would not stop after two weeks they stopped me. I had a 6 month break then went onto perfenidone. Which I have been taking for over two years with no problems except I have to use suncream every day.

I have been living with IPF for about 9 years now

Best of luck

[Jaxleo in reply to rustydexter]

Hi Rusty ,

Thank you for your reply , I am going to visit the Hospital on Thursday to possibly start the Meds , I will try them and see how they go for a few weeks , I have just booked for Spain in September so the Perfindone might not be suitable unless I wear a Parka and a hat , How is your IPF and how does it effect you on a daily basis , ?

[Hidden]

I have been on nintedanib for coming up to three years in April. I am lucky not to have suffered serious side effects. Very occasional diarrhoea, but if you take the tablets with food this is usually avoided. I also have my liver function tested every four months and so far everything has been fine. Everyone is different but my advice is to grab the opportunity as nintedanib can reduce the progression of scarring considerably it also is effective at reducing the incidence of acute exacerbations. I hope everything works out for you. All the best.

[Jaxleo in reply to Hidden]

Hi , thank you for your reply , I am going to speak to my nurse later today and I will ask about leaving the meds until I have fully recovered from the bout of food poisoning that I have had for 10 days and after a planned hernia Op which is due in early 2020 , I hope that you are ok and I look forward to speaking to you again soon , all the best J .

[Aingeful]

I was diagnosed with IPF in May 2017. An appointment was made at the Aintree University Hospital where they are trialing the two anti fibrotic drugs. The other one is Perfenidone? After a lot of thought I refused drugs. They dont offer a cure and have a high side effect profile. My thoughts were that,whatever time I have left,I don't want to spend it on the toilet! I have been lucky enough to remain stable for 2.5 years and my consultant said he thought that I had made the right decision as so many people were having to give up on them. Not sure whether my recent bout of pneumonia has worsened my condition but I hope I revert to that base line. Re CBD oil, my son swears by it ,he takes it for IBS. It does seem to do a lot of people good but like you,I would need to research it. It's also quite expensive?

[Jaxleo in reply to Aingeful]

Hi , Thank you for your reply , I have been reading about the side affects of Nintedanib and I feel the same way as you do about taking it , I am recovering from a severe dose of food poisoning and after spending the last two weeks in and out of the Loo , I don't think that I could spend the rest of my days like this , I wish you all the best J.

[Bearincab]

Aup ive got emphasima and ipf ive been put on steroids prednisilone havent had any side affects yet think its different with every patient mate good luck

[Jaxleo in reply to Bearincab]

Cheers Bear , Thanks for your reply ,I will keep researching and hopefully be able to decide soon , J .

[Oldspark in reply to Bearincab]

I also am on that, but I am now on a lowering dosage as its a steroid, but my eyesight is blurry, and I get very bad constipation, and very bad nights sleep maybe two-three hours each night, but as I have Advanced P.F. I am due to see a specialist on lung disease at the Royal Brompton in January. The thing here is that my body seems to reject any form of drugs except paracetamol. (And Red Wine, Malbec)

Hic Hic

[Jaxleo in reply to Oldspark]

Hi Oldspark , I agree with you that a few glasses of wine or a few Gins is the best cure for anything , I am still very dubious about starting the Nintedanib in January due to the side affects , I am still researching the benefits of CBD oil to see if it can help with IPF . How long have you been diagnosed with IPF and how old are you if you don't mind me asking , I wish you well and keep enjoying the wine , J .

[Oldspark]

Hi Jaxieo I have been out of breath for just over a year now, I got nagged by she who must be obeyed, to go to the quacks, I was sent for tests etc, long story short, I was officially diagnosed this November, by this time my condition had worsened, I have advanced pulmonary fibrosis, I am 73 never smoked in my life, my father and mother did, also my grandparents,

I used to be reasonably active, scuba diving, motorbikes, Moto cross, I am a retired electrician by trade, but now cannot even walk from the bedroom to the bathroom, without getting out of breath.

I have a positive attitude, but I do have my down days. The wine helps, the medication does not????? The oxygen also helps.

I hope you are okay?

[Jaxleo in reply to Oldspark]

Hi Oldspark , thank you for your reply , are you taking the Nintedanib and have you had any side affects , I know that everyone is different but its nice to know what to expect , I am 66 was a very heavy smoker up until 13 years ago when I went cold turkey and packed it in , I retired early at the age of 63 and was looking forward to enjoying my retirement when this breathlessness started , first the Doctors thought Asthma then COPD then the scan showed Emphysema and now the last scan in September its IPF , I am still recovering after a severe bout of Food poisoning and finished a course of 8 a day antibiotics for 7 days yesterday , I am waiting for a hernia Op in the new year so I am going to try to build up my strength for that , lets hope that next year is better than this one , all the best J .

[Oldspark in reply to Jaxleo]

Hi Jaxieo

No I am not on any medication only just oxygen, but I am just on the last few days of my steroids, but who knows what will happen when I get to the Royal Brompton Hospital?

Maybe they will suggest something like that, but as someone else on here said , I would rather go without meds, than spend a lot of time on the loo. I would rather drink the wine lol. I know it doesn't do me any favours, as my wife meds pointing out, but I have to have something's I enjoy in life,

Well the woman and song have gone, just left with the wine.

(And my model railway)

Take great care and have a good Christmas and a Happy New year