Newbie with IPF: Hi I have just... - Living with Inter...

Living with Interstitial Lung Disease (ILD)

Newbie with IPF

Hazel-mary profile image
11 Replies

Hi

I have just joined, my name is Hazel and I live in West Sussex.

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. Has anyone else had this and how have you found to side effects of Pirfenidone.

Many thanks

Hazel

11 Replies
Suzie42 profile image
Suzie42

HI Hazel-mary welcome to the forum. I was like you when I started on Nintedanib my lung function was awful after 1st month of starting, but they then reduced it from 150mg to 100mg twice daily and that sorted lung function. Have you tried the lower dose? I took Nintedanib for nearly a year but side effects got too much for me so they switch me to Pirfenidone last September and I've been ok on that, side effects more capable with.

Let me know how you get on. Best wishes Jill

Hazel-mary profile image
Hazel-mary in reply to Suzie42

Hi Jill

Thank you so much for your reply. It’s lovely from you.

I am waiting for a blood test to ensure that the liver goes back to normal and then they are prescribing me perfenidone.

What side effects are you suffering with perfenidone. I am hoping that I will be better on it I was finding nausea and stomach pains and diarrhoea a little too much on nintedanib

When were you diagnosed

Best wishes

Hazel

Suzie42 profile image
Suzie42 in reply to Hazel-mary

HI Hazel, yes side effects similar I'm afraid,but I find that with Pirfenidone they are less. I have diarrhoea but I control it with Loperamide and I only go once a day so dont feel out of control. You start off with a low dose and gradually build up to Maximum but if you can't tolerate that you reduce down to what you can tolerate. I was diagnosed with IPF 2 years ago and my lung function got better after the first year on medication,this yearit went down a bit but that was because I had several chest infections.

its so important to eat enough food before you take the medication as that helps.

My appetite has reduced over the last 2 years because if the medication but I'm so glad I am able to tolerate medication as it's the only hope for us.

please ask me anything else as there arent many of us on this forum with IPF.

Take care. Jill

Hazel-mary profile image
Hazel-mary in reply to Suzie42

thanks Jill it’s so nice to have someone to chat to that understands how it feels. It’s so scary being given this diagnosis, I am in denial I think because I don’t feel breathless unless I am rushing around or walking up hill, I thought I was just unfit and getting older 🙈🙈 I still feel well, I’m still in full time work Do you still work

I have a blood test booked for 10th November , fingers crossed it will be ok and I can start perfenodone which is being sorted by the Brompton hospital

I also have Crohns disease, do you have any other conditions.

How did you get diagnosed, do you have a cough, I don’t have a cough most of the time , but I do have a lot of phlegm , feels like it’s in my throat most of the time 😩

sorry if I ask to many questions , it’s just lovely to hear from you

Are you on any other forums

Best wishes

Hazel

Suzie42 profile image
Suzie42 in reply to Hazel-mary

Hi Hazel, like you I didn't have a cough unlike most who are diagnosed with IPF. I had gone to my gp with what i described as a tickling sensation when i took a deep breath, it was so small but it was annoying. My gp sent me for chest xray and did spirometry. My xray was clear but she said she thought i may have fibrosis and referred me to chest consultant who then told me no it wasn't IPF but said would do CT scan. That showed IPF and was referred to the Brompton. The CNS I have at the Brompton has been great, I email her if I'm concerned with anything.

I retired from work 8 years ago, I'm afraid I'm 70 this year!

I have many other problems.... I had a hysterectomy this year and that went well. The year I was diagnosed with IPF a few months later was diagnosed with CLL (chronic lymphocytic leukaemia) so am on forum with that. I am also diabetic and asthmatic. Many other ailments but won't bore you.

I have found with IPF you must keep as active as possible, yes going up hill is a killer to me but I push with it. Also its important to keep clear of colds and coughs as with every chest infection can make IPF worse. I've had 3 chest infections since 2020 and the last one in June made me quite ill. I've since recovered from it but when I had lung function early September my lung function had gone down slightly.

I recently caught covid and luckily mildly and haven't had cough with it, just sore throat and catarrh. I've always had chronic catarrh., but is worse now.

Sorry for this essay 😊 but it's hard to say everything quickly.

Unlucky for you with Crohn's as the medication affects the bowels.

I would stress though when you start taking perfidene start really slowly, stay on the lower dose longer and up it slower than they recommend. The longer you stay on the medication the sooner side effects cease. I have learnt with this medication that happens. As long as your liver function stays good.

Let me know how you get on please and if there is anything else I can help with, don't hesitate in contacting me. I'm surprised no other IPF people on this forum have answered you yet because we are all different with this illness.

Take care and best wishes. Jill x

Hazel-mary profile image
Hazel-mary in reply to Suzie42

Hi Jill

I hope you are keeping well.

I had my blood test results and the liver function has gone back to normal thank goodness. I am trying to get hold of the ILD nurses to see when I can start on perfenidone

Like you I had mild covid and luckily no cough

sorry to hear you have CLL and diabetes as well, i to have asthma. Seems like we are magnets for all the ailments 🙈

Do you do regular exercises or walking because I’m still in full time work I struggle to fit in much more than walking my little dog for exercise .

I had a scare on Friday, I woke up with an irregular heart beat, ended up in A&E and after trying 2 different drugs to sort it out and failing , they shocked me back into rhythm. It’s been fine since.

Do you get flair ups of Ipf ? Since coming off the Nintedinib my chest is feeling tight and taking in deep breaths feels harder and makes me cough. Should I speak to the ILD nurses, I haven’t really been given much advice on who to contact if symptoms change. Trying to get an appointment with my doctor just to talk things through and ask advice is really difficult , trying to get passed the receptionist is a nightmare. What is CNS ? Sorry I’m probably being a bit dim 🙈

Do you find the colder weather affects your breathing

Do you have family living nearby my daughter , her partner and my 2 grandsons live 15 mins away and see them most weeks . My son , his partner and my granddaughter live 25 mins away , I see them quite regularly too. We are hoping to go away together for my 60th next year, we have a 4 day break to Rome booked. I haven’t sorted out insurance yet but must do that soon, I’m guessing it will be expensive

Sorry if I’ve ranted on, but it’s so nice to have someone with experience of IPF to chat to

Take care

Hazel x

Currygirl profile image
Currygirl in reply to Hazel-mary

Hello Hazel mary have only just seen your posts iwas diagnosed with pulmonary fibrosis last year and also scared my sats go down to 80 when I walk or anything yet when at rest they are 96 I e got a finger probe hope you are doing well I live near penzance Cornwall x

Hazel-mary profile image
Hazel-mary in reply to Currygirl

Hi Currygirl

Thank you for your response.

My sats are usually between 97 and 91. First thing in the morning is usually when they are low and during the day they usually stay between 97 and 94

Are you on ninteninib or pirfenidone for the fibrosis.

I love Devon and Cornwall have lovely memories of holidays down that way.

I hope you are well

From

Hazel

Currygirl profile image
Currygirl in reply to Hazel-mary

Thanks for Your reply not on those meds yet x

Suzie42 profile image
Suzie42

Hi Hazel,Glad to hear from you again. Sorry you have been unwell. To answer your questions ...

CNS is clinical nurse specialist, I was allocated a nurse at the Brompton and given email and tel no. I usually email her but have phoned. Havent you been given a named nurse. I think you definitely need to speak on the phone to her but with you working full time, that will be hard.

I'm afraid your gp probably wont have much knowledge about the IPF as it isn't a common disease. I think it would help if you had a chest consultant nearer where you live you can go and see as you may need different inhalers for asthma and can help with getting you lung function tests instead of going to the Brompton.

I walk when I can to get exercise as it's best for the lungs. Try and go for walks at the weekend. If you can.

I have a daughter 15 mins by car away with 2 grandchildren. My son lives the other side of London.

Great to hear you are going away for your 60th I did have trouble getting travel insurance but have managed it. We used Saga last time. It wasn't too expensive.

You can also PM (private message me) on this forum.

Let me know how you get on and anything else I can help you with.

Take care

Best wishes Jill x

Gulmarglover profile image
Gulmarglover

I have been on nintedanib 100mg for 6 months with no side effects apart from losing weight which I don’t mind. But my breathlessness has increased and I am now on ambulatory oxygen. I think they let you have the meds for one year and then stop if there has been no decrease of symptoms.

I would welcome others experience of using oxygen, as I am not sure if I am doing so to best advantage. It helps if I am walking or doing things in the house but small cylinders last such a short time. The concentrator is much better inside.