No appetite & nausea

[Tawny10]

Hi all

I have Pulmonary Fibrosis caused by Hypersensitivity Pneumonitis. Now on Nintedanib (taken with food) & Mycophenolate.

Im struggling with fatigue but also nausea & have lost my appetite.

Any tips would be very welcome??

[Injecter1]

hi you have the same diagnosis as me…I think loss of appetite is something we all struggle with. Small amounts more often and energy bars help a little. I lost 2 stone on Nintedinib so keep a close eye on your weight. I couldn’t tolerate Nintedinib and had to switch to perfenidone which is a lot easier to tolerate. Do you take steroids as well?

[Tawny10 in reply to Injecter1]

Just weaned off steroids so that hasn’t helped the appetite but has eased the incontinence !!

[Bonchops10 in reply to Injecter1]

Just been discharged Fromm hospital with chest infection (pneumomediastinum), now there’s a mouthful, feels like bubble wrap under your skin. Was on 20mg steroids but now on 40mg will gradually reduce back to maintenance level of 20mg. I’m going to give it another week at 40 as I am now 6stone 4 lbs and must put some weight on!! Also have a fungal infection in a cavity in my lung, take Voriconazole for that but don’t think it’s doing much good. Was declined a lung transplant in July as too high risk. Am now on ambulatory oxygen and under palliative care. I had 3 people virtually line up to get me to agree to a dnar before leaving hospital. I get why but it’s all a bit too much. Still on 100mg nintedanib twice a day, well will be once infection has gone, also on methotrexate which they’ve suspended for a couple of weeks. And loads of other things hey ho, onwards and upwards. Dita xxx

[CDPO16]

I have no tips but offer my sympathy. I have stage 4 emphysema and have had a very poor appetite for years but started with nausea early this year. GP hasn't put a diagnosis on it but prescribed meds to ease it. Some days they help, others not. It's a lousy feeling, I hope yours eases soon xx

[Tawny10 in reply to CDPO16]

thank you

[Bonchops10]

Hi Tawny10, I’ve got ra and rheumatoid pulmonary fibrosis and a range of other issues. However, focusing on the nintedanib, I was on 150mg twice a day for about 8 months. It was awful. I experienced the bulk of the side effects. I am now on a reduced dose of 100mg twice a day and seem to tolerate this so much better. Also on steroids and a sweet shop full of other drugs. The nintedanib doc said I was probably having all this trouble because of my slight frame (lost so much weight) so the dose was too high. Hopefully, you can discuss this with your doc. Kind regards Dita

[cazza34]

Hello Tawny10I have same conditions as yourself, I have got any tips as such other than small meals /snacks. I cant eat big meals as I end up coughing lots and I dont have the appetite. Fatigue is hard ...I write this from my bed! I've felt not great since my covid jab on Saturday. But prior to that declining energy. I drive everywhere and I do walk, but can walk far, last week I went in a wheelchair for the first time. Feel free to DM if u have any questions.

[Tawny10 in reply to cazza34]

Bless you it’s hard isn’t it Trying to find a balance between doing what we can do to keep active & not overdoing it!!

I find motivation really hard some days & could just sleep… but then awake all night!!

I think you’re right about eating little & often though 😉

[Patk1]

I've other lung problems but suffer frm exhaustion/ fatigue.its hard to bear so I feel for u.i hope other suggestions help u x

[Tryphena134]

I have the same diagnosis as you. Started on Nintedadnib in February , like you, reduced to lower dosage after side effects. This was OK for a while but I did lose over 2 st quite quickly, then one day I suffered a diarrhoea session that lasted 24 hours. I’ve stopped Nintedanib completely now and my appetite is much better and weight loss has stopped.

If you look on the US website for PF there is quite a lot of info about systemic enzymes being used for PF.

I find it odd there is absolutely nothing on any of the UK websites about this, probably because the NHS doesn’t recognise the treatment.

I ordered a jar of 300 capsules of Serracorr NK from AST in the US and am only one week into taking them, so far too early to report any affects/benefits as still building up to full dosage. I chose this company as they seem to be used by a lot of researchers.

I too tried Mycophenolate but that didn’t suit me either, it gave me brain fog as I increased the dose and I was advised by a senior doctor at the Royal Brompton to stop it.

I was told by the pharmacist at the Brompton I wasn’t suitable for the other anti fibrotic mentioned.

It’s a rotten disease and I envy people who can tolerate antifibrotics but not for me sadly.

I’m on oxygen 24/7 and use a wheelchair. I’m lucky to have a supportive husband and daughters.

I wish you all the best.

[R0B1]

Hi Tawny, doc gave me omeprazole 10mg caps for the nausea take one in the morning, things should settel down after a few weeks.