Interstitial Lung Disease: Hi I've... - Lung Conditions C...

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Interstitial Lung Disease

Sara_2611 profile image

Hi

I've just joined . I have a lung condition called Intersitital Lung Disease ,& was diagnosed in 2019 I can no longer work & slightest activities makes me tired, walking about the house, getting dressed etc going upstairs

I'm on Mycophenalate which is taken 3 in the morning & 3 at night & have regulaar 3 monthly blood tests which I ahte more than anything cos im needlephobic

I do some of the excercises in the BLF book but it still tires me out . I use Ventolin 4 times a day & coughing 24/7

I can only take lemsips to suppress it because other tablets that are given to me to help me get it out of my system disagrees with me

36 Replies

Hi, just want to say welcome to the British Lung Foundation patient's forum. I'm sorry I don't know anything about ILD but I'm sure there are some members here with it and hope they'll be along soon......wondering if you take a preventer inhaler as well as your rescue ventolin.

Sara_2611 profile image
Sara_2611 in reply to peege

Aww thanks for the welcome -no i dont take a preventative one -only my ventolin inhaler & my mycophenalate tablets along with constant being used as apin cushion by the NHS ( masquerading as blood tests)

Damon1864 profile image
Damon1864Volunteer

Hi Sara lovely to meet you, so glad you decided to join. I'm sorry but I know nothing about your illness. But I do know that there are people on this site who, so give it a little time and I'm sure someone will be along who can help you. Please keep posting, have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

Sara_2611 profile image
Sara_2611 in reply to Damon1864

Thanks a lot & lovely to meet you too

Hi and welcome Sara. I can't help with regard to ILD but hope someone who can will come along.

Sara_2611 profile image
Sara_2611 in reply to CDPO16

Thanks for the welcome -much appreciated

Hi Sara. Welcome to the forum. It's a very friendly site with lots of advice, support and good humour. There are members on the forum who also suffer from ILD and will hopefully be happy to answer any questions you have. Take care and stay safe xxx

Sara_2611 profile image
Sara_2611 in reply to HollyBoyd

aww thanks for the welcome I ll probably have a few questions at some point . I was having trouble getting into this site at first , but now im in im glad

Hi Sara,

A hearty welcome. 😊 I have Bronchiolitis Obliterans a disease that destroys the tiniest aveoli in the lungs. I have it now in my left lung as my right had a transplant in 2019. Interstitial lung disease is actually an umbrella term used for a large group of diseases that cause scarring. Do you know specifically which one you have? Or maybe you have more than one? It would be interesting to know since each one, by and large have their own characteristics. I'm sorry to read about the coughing too. That must be exhausting. I

Cas xx 🙋🐕

Hi Sarah and welcome to the site. Sorry to hear you are coughing 24/7 and can sympathise with this. I have bronchiectasis which was made worse when I had a bad cold and developed sinusitis. I suffered this for 3 years until summer last year when I had a sinus op, thankfully the coughing and over production of mucus has now gone, sadly I have other problems from the op but would sooner live with them than coughing and blowing my nose all day long. I make my own honey, lemon, ginger drinks and they do seem to ease things. I do hope you can get some advice from the people on here who have ILD or you can ring the Blf helpline as Im sure they will be able to advise x

Blf helpine Monday - Friday 9.30am - 5pm on 03000 030 555.

Sara_2611 profile image
Sara_2611 in reply to Izb1

Aww thanks for the welcome & thanks for the phone no Ive stored it in my contacts book in my phone - they ll be a help along side my hospital appointments im sure everyone will be as helpful to me as they are each other

Izb1 profile image
Izb1 in reply to Sara_2611

You are very welcome, there is a drop down box on the right hand side if you need contacts , you can also do a search on the top right x

Sara_2611 profile image
Sara_2611 in reply to Izb1

aww thanks youre very helpful

ILD covers various lung problems. I am under the ILD team at the Roy’s Brompton. I have an autoimmune disease which is attacking my lungs and has severely impaired them. I am on mycophenalate 1000mg in the morning and the same in the evening. However, I am taking 9 other drugs as well. I suggest you contact your ILD team and ask for their help. Good luck.

Oh right -I didnt know that -where is Roys Brompton -Im under north manchester general hospital My immune systwms are also damamged -i have what is known as a JO 1 Antibody that has caused this which is why I am classed as vulnerable & when i was first diagnosed i was told to self isolate straight away & have doen ever since .I only go out to college on monday & horseriding on a friday i do my voluntary teaching via zoom

Royal Brompton - silly autocorrect! It’s in London, and is a lung and heart specialist hospital. They take patients from all over the country.

Oh right I see -I see the combined chest & rheumatology clinic at noth manchester geenral hospital

Hi Sara, I also have only just joined and finding people being supportive. I have ILD but have only just been diagnosed so can't really give you much advice I don't have a cough I am on 10mg of Prednisolone and am on oxygen 16 hours a day seems horrendous but quite easy. I am also a type 2 diabetic so have to monitor things quite closely. Here to help in future if I can

Sara_2611 profile image
Sara_2611 in reply to

oh wow youre lucky not to have much of a cough- Im coughing all the time Im on mycophenalate -initially it was x 2 500mg in the morning & 2 x 500mg at night, Now because it ahs come on a bit more its been increased to 3 but not on oxygen .In august i spent 3 days in noth manchester general hospital because while i was trying to walk round sainsburys - i felt very dizzy & when mum took me up the hospital my oxygen levels were 60 which is dangerous & they kept me in for 3 days to get it back to 90 which is what ti shoud be

Hello and welcome to this lovely forum Sara

Sara_2611 profile image
Sara_2611 in reply to Dedalus

Thank you kindly appreciate that

Hi and welcome Sara 👋😊

thanks so much much appreciated nice to meet everyone in a similar situation as me

thanks very much for the welcome - appreciate that

Hi Sara. I find you can’t beat Fisherman’s Friends when I cough. I have a dry cough sometimes with my ILD which is COP Cryptogenic organising pneumonia. My only other medication is prednisolone, except for cimetidine to combat the side effects of the prednisolone. I don’t yet need a pill to counteract the cimetidine !!

👍 👍💜

I tend to use Halls Menthlyptus as well but sugar free because I dont eat anything high in sugar (alongside lemsips for chesty coughs

I'll stand up for Jakeman's Black!So sorry about the cough; I get it like this when I get a chest infection & it's exhausting - for the neighbours as well as me! In 'ordinary' times, when I start to cough, a sniffer (Mometasone) helps me - but this might not be relevant to you. Poor thing... You could always ask if there's anything similar to help you. Best wishes x

I use lemsips

Hello Sara, welcome to a lovely site That comment on Fisherman’s Friends I fully agree with and they are the best I have found. Do however tell your dentist or hygienist for advice on avoiding tooth damage.

As others have said Interstitial Lung Disease(ILD) is an umbrella term for a variety of lung conditions. The accurate diagnosis is important as it specifies the treatment requirements. Has that been given to you?

I originally was diagnosed in 2006 and have seen and have seen various approaches advanced in that time. Recently I, with other patients, have contributed to a book offering guidelines to living with ILD

There is no doubt that developing a positive approach to well-being is a large contributing factor. So also is becoming your own advocate in treatment. That’s where the diagnosis comes in. I am so glad that you have your mother to support you on this journey and I am sure that you both will find this site so very helpful. Grace

The original fisherman's friend flavour reminds me of liquorice and they are nice and soothing as well!

I used to like the cherry tunes but went off them when they became sugar free!

Yes i used to like them too but theyre too high in sugar for me

There is a sugar free one also.

Oh wow is there ? thanks for telling me I might research that

Welcome to this friendly, funny and informative forum. I don't have ILD but others with experience will be along soon. I can relate to the fatigue though. We have to learn how to pace ourselves in order to use our limited pool of energy wisely. (Google The Spoon Theory, the girl uses spoons to represent a unit of energy)

Thanks very much for the welcome

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