Mercedes 15

hi there is there anyone who has idiopathic pulmonary fibrosis and take nintedanib?

[Injecter1]

Hi there…. You sound so much like me. Diagnosed 5 yrs ago 2017 following VATS procedure which said non specific pneumonitis. I was given steroids and monitored, 2021 I was told it was now clinically IPF and started on Nintedinib. I battled through taking them but found the side effects brutal, lost 2 stone, nausea/diarrhoea etc. so had to stop them. I now take perfenidone. Can I help in any way?

[Hidden in reply to Injecter1]

hi there, thank you for your reply, yes I too suffer from the same side effects, they can be so random, I can be fine for a few weeks then have a random day when I feel sick and have to almost run to the toilet. How are you with the perfenidone?

[Hidden in reply to Hidden]

also have you been assessed for lung transplant, I had all the tests last year

[Injecter1 in reply to Hidden]

Hi…. I was assessed for lung transplant but I’m not suitable due to an antibody I have. My side effects from the Nintedinib were very severe and I had them all the time, I battled on because I was scared to stop as there really aren’t any other options for us. The perfenidone is much easier to take and side effects are tolerable. My last lung function shows a 12%drop so they will take me off them after next appointment as they don’t appear to be working, the fibrosis is extensive now. It’s so difficult isn’t it but you’re still working so that’s really good. Have you been accepted for transplant and what’s your lung function doing?

[Hidden in reply to Injecter1]

Hi thanks for your reply. Don’t think I will be working for much longer as the cold weather is not good for me, Am in bed with chest infection at the moment just started antibiotics off duty doctor. It’s very hard living with this, just the not knowing how your future is going to be. At my last lung function test I was down to 50%. That was last July. I’m also down for knee replacement but the surgeon says I won’t heal well while taking nintedanib and so this makes a difficult decision for me, I was supposed to have it done 10th Jan but he rang me a week before and convinced me not to go through with it even though my respiratory consultant said I only needed to stop it for 3 weeks. Seeing him again (the surgeon) so will see what he says.

[Hidden]

sorry I just read that you were unsuitable for transplantation

[Injecter1 in reply to Hidden]

yes did you get the rest of the text?

[Hidden in reply to Injecter1]

just have thanks, I’m upstairs and the internet up here is not good. I’m not on the transplant list yet as he said I wasn’t bad enough and will see me again in July to carry out the same tests.

[Injecter1 in reply to Hidden]

If you haven’t done one try a pulmonary rehabilitation course, it’s so important to keep as fit as you can especially if you might go on the transplant list. X

[Hidden in reply to Injecter1]

thank you Geraldine, I was thinking of that……my name is Deborah xx

[Injecter1]

Hi Deborah…. It’s lovely to chat with you, because I think we are in the minority on here. Your job must be difficult if you’re outside in this weather, and children pass lots of bugs about so that’s challenging as well. You didn’t say if you struggle with breathlessness or your ok?

[Hidden in reply to Injecter1]

Hi, I don’t really get out of breath , only on inclines

[Hidden]

Hi, it’s going to be hard to leave the job I love, I’ve been there for 23yrs looking after reception children. I don’t really get out of breath only when there’s an incline

[1carus]

yes been on it for over 6 months - so far so good

[Hidden in reply to 1carus]

Hi ,thanks for your reply fingers crossed for you

[1carus in reply to Hidden]

thanks - too old for transplant and the emphysema complicates other treatments so hope it will continue to work - am having stomach upsets but nothing too serious

wishing you well for your future too

[Hidden in reply to 1carus]

🤞

[Mrbojangles]

hi Merc…

I was on Nintedinab for 2 years without any problems whatsoever but was switched to Pirfenidone after i suffered an embolic stroke a year ago which i am pleased to report is also behaving.

Stay safe…

👍👍

[Hidden in reply to Mrbojangles]

thanks for your reply , my very best wishes to you

[Suzie42]

Hi Deborah I also started on Nintedanib but after a year of awful side effects was put on Perifidenone and although having to wear factor 50 suncream going out, my side effects have reduced. In fact I have found out the longer on Perifidenone the side effects reduce. I've been on it for 16 months and have regained a little of weight lost on Nintedanib. Also because of the diarrhoea I suffered in Nintedanib I lost iron and needed iron infusion. My haematologist who I saw last week said my blood results have returned to normal. Consider the change. Good luck with it all. Jill

[Hidden in reply to Suzie42]

thanks for your reply Jill, I’ll see how I go with the nintedanib and may ask to change when I next see my consultant, best wishes to you . Deborah

[Bonchops10]

hi Geraldine and Deborah! I think Geraldine is right we do seem to be a bit of a minority. I am on nintedanib and am experiencing all the symptoms that they warn you about. Since Christmas I’ve been taking an Imodium or two every day and the diarrhoea has settled down. I’ve been on the tabs since July 22. I’ve lost 2 1/2 stone since being diagnosed with rheumatoid ILD in Dec 20. I also have RA diagnosed a month before. I’ve lost 50% lung capacity and the consultant said he’s more concerned about the gas exchange in the lungs. Haven’t been sent for transplant assessment but was told maybe I should start thinking about it. It’s all incredibly scary. Trying to stay as positive as possible as I’m sure you are too but some days……… my name’s Dita

[Hidden in reply to Bonchops10]

Hi Dita thanks for your reply. Yes it’s all very scary not knowing how things will progress. I was offered all the tests last July for double transplant as my breathing tests had declined considerably , down to 50%. Saw one of the transplant team who said I wasn’t ready to be put on the list yet and would see me in a years time and do the same breathing tests to see if things had changed. Deborah

[Bonchops10 in reply to Bonchops10]

Morning Deborah, had a review with the consultant this week about nintedanib. Interestingly she suggested that I should consider reducing the tabs to 100mg twice a day. She also suggested I started a month’s trial by taking only 1 x 150mg tab in the evening to see how my body coped with that. If it worked they’ll change the tabs completely to only 100mg dosage twice a day. She said it’s my choice so i’m having a think about it. If things don’t improve for you, I thought this might be something you may want to consider. Good luck. Dita

[Hidden in reply to Bonchops10]

Hi Dita, thanks very much for suggesting that. When I next speak to my consultant which should be the end of this month I shall suggest I try this to him. Take care ……Deborah

[Hazel-mary]

hi Deborah

I was nintedinab for a couple of months , I was starting to cope with the sickness and diarrhoea but the tablets effected my liver function so I had to come off them. I have been put on perfenidone but am struggling with the nausea and diarrhoea and feeling rough.

I am still working but am beginning to find it difficult with the diarrhoea , I have a lung function on 3rd feb at the Brompton and am hoping that it won’t be any worse that the last one.

Like you i get breathless on inclines and if I have to rush to get somewhere.

would be lovely to here from you

Best wishes

Hazel

[Hidden in reply to Hazel-mary]

Hi Hazel thanks for your reply, yes it’s hard because of the side effects , I can be fine for a while then it just comes on and is not nice at all.lost 9lbs and don’t really want to lose anymore. I should be due for a scan soon to see where I am. My very best wishes to you. Deborah

[Hazel-mary in reply to Hidden]

hi Deborah

I know exactly what you mean with being ok for a while and then having a bad time with it. I’ve a few bad days and just got some anti sickness tablets and Imodium and hopefully they will help.

I am just about to start on a pulmonary rehabilitation course. Hopefully it will also help with teaching how to cope as things get worse (very scary thought)

Best wishes to you. Hope you get your scan soon.

Hazel

[Hidden in reply to Hazel-mary]

Thanks Hazel, I hope the medication helps , just getting over a bad chest infection, have started antibiotics just have to rest and keep warm. I hope the pulmonary rehab helps , let me know how you get on. Best wishes to you Deborah

[Suzie42 in reply to Hazel-mary]

Hi Hazel,do you have Loperamide for diarrhoea also my gp gave me codeine to take at night only these 2 helped control it and I also had anti sickness tabs, although some work better than others. Jill x

[Hidden in reply to Suzie42]

Hi Jill my name is Deborah, I have the loperamide but have never tried taking them as I really can’t predict when it will happen, but I will give it a go. I tried the anti sickness tablets and to be honest made me feel worse x

[Suzie42 in reply to Hidden]

Hi Deborah you need to start taking Loperamide once you have been to the toilet, then after your next bowel action and carry on until it lessens. They work really quickly and will give back control to you.Ask to try another antisickness tablet, I have Metoclopramide but have tried others that make me worse. They work for me after half an hour. Don't take them hardly at all now. Your body has to get used to the new medication so you need help in the form of Loperamide and antisickness. Hope you feel better with it all soon Jx

[Hidden in reply to Suzie42]

thanks so much Jill x

[Hidden in reply to Suzie42]

Hi Gill, just wondering how you are getting on with the perfenidone? I see you are a lover of the Greek islands and Madeira. We have had some wonderful holidays and these are where we usually go. X Deb

[Suzie42 in reply to Hidden]

Hi Deb, yes I am now tolerating the maximum dose, so fingers crossed. How are you getting on with them now? Yes totally in love with the Greek Islands, we already have our flights booked for Sept and are waiting for easyjet to release Dec dates for Madeira.

[Hidden in reply to Suzie42]

oh that’s good news Gill, let’s hope it stays that way 🤞I took the loperamide the other day after a bad episode, and it did settle it thanks, I haven’t tried the anti sickness tablets yet, but will if I feel sick again. I have decided to give my notice in at the school and look forward to booking a few holidays, may be Skiathos or Santorini.

[Hidden in reply to Suzie42]

I have read that you need to use a factor 50 when taking the perfenidone do you have to use it and is it ok the go to a hot country

[Suzie42 in reply to Hidden]

100% you need to use factor 50 with Perifidenone if you don't you can get a very bad rash and you wont be able to take Perifidenone again so not advisable. I was told to wear sun block in the winter when its sunny as well. Also I have a factor 50 sun hat I bought online from Australia. Ofcourse you can go to hot countries but must stay under umbrellas and out of the sun during 12 to 3pm. I've been fine. I buy P20 factor 50 suncream you only have to use it once a day. Expensive on outlay but lasts longer so better value. Best wishes Jill xx

[Hidden in reply to Suzie42]

thanks for your reply Jill, very helpful xx

[Suzie42 in reply to Hidden]

My pleasure xx

[Seaberg]

Hello Deborah I was on Nintedinab for about 7 months and suffered the miserable side effects nausea and diarrhoea and general feeling of depression and lack of well being. I discussed it with my consultant and pharmacist and came off the medication as I preferred a better quality of life to whatever benefits Nintedinab offered. Almost immediately I felt so much better. Nobody has suggested that I try perfenidone.

I have ILD and already take steroids and mycophenalate. At 82 i was rather sceptical about doing the pulmonary rehabilitation course but three weeks in the cross trainers, treadmills and other unlikely machines MAY be helping and are really quite fun!

I do wish everyone well, with hopes that we can all find help and hopes for making life easier.

[Hidden in reply to Seaberg]

thank you so much for your reply sending my very best wishes to you