ILD/possible NSIP

I have recently been diagnosed with an ILD/possible NSIP , it’s not clear really what’s happening as I have only had a couple of telephone consultations , it really shocked me I just wasn’t expecting this it’s all happening so quick. Up until last October I was still running/working out but started experiencing shortness of breath and a persistent cough. I have always kept healthy never smoked so never thought about it being lung disease.the copy of the letter sent to GP said my CT results said sub pleural fibrosis goal change in right lower lobe and left upper lobe with traction bronchiectatis. Sparing of the secondary pulmonary lobules. ANA positive with positive PR3 antibody. I just wondered if anyone has had a similar experience and has any advice on what I need to know/ask? ( I’ve just started on 40 mg prednisolone..

[winfar]

Sorry that you have received this diagnosis and i hope you are offered some treatment to help you. I am also diagnosed NSIP along with every other pulmonary Fibrosis. Firstly, i was told IPF then no it is not that and still really do not know what and, apart from permanent steroids and carbacistine , I do not receive any treatment. I have an appointment with a new consultant in january, if it is not cancelled, and hope they realise the deterioation and maybe offer me some relief. I must add that i am 85 years old so please don't think this will happen to you. There is treatment to prevent progress so make sure you ask about it.

[Hidden in reply to winfar]

Thank you for your reply, I hope you’re appointment goes ahead in January. It’s so frustrating isn’t it!!! I feel a bit like everyone is to busy to take time to explain anything and I’m not sure what to do/ask

[Suzie42]

Like you i was diagnised with IPF earlier thus year, came out of the blue, non smoker and moderately fit. Unlucky, is what i was told, nothing ive done wrong. Its a shock isnt it. I know mine isnt the same as yours and on medication Ofev for mine. Sorry to hear about it. Take care

[Hidden in reply to Suzie42]

Thank you, yes it is a shock isn’t it, hope everything goes well for you

[Oshgosh]

I’ve got ILD NSIP. Also rheumatoid athritis,Lupus.

The medication helps,as does the excellent care I receive from Wythenshawe hospital.

You have to look after yourself,wrap up when you go out,scarf gloves etc.the high dose of Prednisolone will help,only problem is it keeps you awake.

Take it as early in the morning as possible.if I’m waken at 6 am I’ll get up and take my 10 mg.if I’m tired in the day I’ll have a nap. Take care

[Hidden in reply to Oshgosh]

Thank you for the tip on taking medication, I am having trouble sleeping so will try taking earlier

[Minsha]

Hello there!

I don’t have the same condition as you but I do know about Pred!

I’ve been on and off Predinisolone for the past 4/5 years now ... it’s seems to be the only thing that manages my cough... I’m also on methotrexate injections... 40mg of pred is a lot and may well be causing horrible side effects.

Mine were mainly dizziness, severe bloating, weight gain , hair loss, prediabetes!! You may experience others but take the advice of your clinician... we have to trust someone and initially I couldn’t trust anyone and kept reading stuff myself.... that’s given me severe health anxiety!

I have sarcoidosis and fibrosis in my lungs .... have decided to leave my destiny to God and just live a healthy and happy a life as possible and not worry too much about the future... take each day as it comes and listen to the doctors ( do keep balancing pros and cons though... our goals and theirs aren’t always the same!)

It takes time but at one point all I could think about was the worst... now I realise despite everything, we have to live well and take each day as it comes ...we are all mortal so that takes care of itself.

Sorry if this is too much info... I just started writing and this came up for me...

btw .. despite my shortness of breath, cough etc I have still returned to work and walk everyday to try to help keep me as well as possible ... mind and body! I am a right fatty now though... didn’t think I was vain but god the steroids are horrible on that front .... I’m getting used to it but slowly!!!

😆

[Oshgosh in reply to Minsha]

You’re right about taking each day at a time. I have Interstitial lu g disease IPF Rheumatoid Athritis and lupus. M retired,so don’t have the bother of going to work. The last year has been hard.I’m on immunosuppressants,was on Myclophenate 2 mgm.

All year. I kept getting viral infections,felt lousy. No appetite ,nauseous I kept enquiring about a lower dose,but no decision was ever made

In October I had acute lethargy,hot sweats/ coldsweats. It went on and on,getting worse.

After3 weeksI asked for help.rheumatologist sent a message ifIwas still declining I needed to be checked.

SoI went to A N E they did all tests,kept me overnight.

They dais to stop the Mycophenalate untilIfelt better.

After a week I felt a bit better,could sit up straight.after 3 weeks I felt more like the old me.

I started on 1 mgm Myclophenate daily,then titrated to1.5 daily.

So far ok.

Ihad a phone consultation,stated my case and theyagreedI could try staying on 1.5.

I was very humble,said I know I need to be on it,but can’t cope any more with feeling ill all the time.

You’re very right about their goals and our goals being different. Tak care

[Hidden in reply to Oshgosh]

I hope you manage to keep well and start to feel more able to cope. Take care

[Minsha]

Good luck with things though x

[Hidden]

Thank you so much for taking the time to send a message it is much appreciated. I know logically I have to take each day as it comes and remain positive, I’m sure in time I will get my head around things and hopefully take positive steps to stay as well as possible xx

[Oshgosh]

Day to day is the best way.Avoid Dr Google,it’s best to stick to BLF and the NHS website.

I frightened myself with it all when Iwas first diagnosed.x