Newby hi

[Knitmum]

Hi everyone I was recently diagnosed with IPF but now after some consultation with other my consultant has told me I have fibrotic nsip i am getting very frustrated with so many questions and no one to ask have been given cellcept 250mg started yesterday has anyone got any information?about the disease and the medication

[Bkin]

Hello Knitmum and welcome

I am so sorry to hear of your recent diagnosis, if you are quick you may be able to speak with one of the nurses on the helpline before the weekend:

blf.org.uk/support-for-you/...

03000 030 555

My diagnosis is not the same as yours but hopefully you will get a response from others who can appreciate more fully your situation.

Best wishes BK

[Bkin]

Regarding your medication there should be an information leaflet that comes with it that you can read. You can also check this on the emc site:

medicines.org.uk/emc/produc...

[Oshgosh]

Hi, welcome to the forum . I have an Interstitial ling condition. NSIP . There is an Interstp lung disease form m on HEALTH UNLOCKED . It’s not as busy as this forum, but if you post a question some body will answer it.

When I was first diagnosed nearly 3 years ago, I was desperate for information. The best advice I can give you is please please don’t google. The best reliable information sources are the BLF . Also the MHS website. This forum has been very useful to me, practically and emotionally. PM me if you want to

[Susieliz39 in reply to Oshgosh]

Hello OshgoshYou may recall my post about ILD on the lupus forum website and I think we have exchanged posts when I was first diagnosed in November. I’ve just found out that I too have NSIP and really am, at the minute trying to process it all. I’ve had 3 rounds of cyclophosphamide snd have begun mycophenolate two weeks ago. Any advice or info you have to share would be great!

Take care

Sue x

[Oshgosh in reply to Susieliz39]

I found it very hard to come to terms with .The best thing to do is look after yourself,don’t google,stick tithes forum,NHS website BLF..

So much random stuff comes up on the net,it’s east to frighten yourself.

If you have any questions,feel free to private message and I’ll do my best to help.

Be very kind to yourself xx

[Susieliz39 in reply to Oshgosh]

Many thanks Oshgosh for your reply, it really is appreciated. I’ve already made the mistake of googling 🤦‍♀️😳 trying to take each day as it comes but easier said than done. 10 months ago I had an interview for a headship…. I’m now applying for ill health retirement. How life changes on a sixpence. Not easy to adjust and accept. I suddenly feel very old! 😢Take care of yourself too xx

[Oshgosh in reply to Susieliz39]

What helped me was Cofnitive behaviour Theraphy, I’ve done 2 courses of it.II did it online both times,the first pre Covid because itwas more convenient,the second at the time of Pandemic.

It helped me sort my head out .diagnosed after am emergency No.

Iysaddected my retirement ni.

It’s ruined my retire& I.

Realised that I needed to prioritise myself.

Had t. Even we’ll for a few years,but I was 67 when I was diagnosed aster an emergency admission.

At least I didn’t have t worry about work,as I’d been working on the nurse bani.

My retirement isn’t whatI planned,but some how I’m managing to cope.

B careful with your health.

I use a page a day diary to keep up with things.

Ihope you are getting good advice on early retirement.

Unions are usually help ful.the CAB are helpful,their phone system is a nightmare ,but worth hanging on to get advice.

If my posts are a bit garbled,it’s because I’m waiting for cataract surgery and can’t see very well.

Take care x

[Susieliz39 in reply to Oshgosh]

Many thanks for your reply Oshgosh. There’s so much to process and deal with isn’t there? The process of needing to finish work is hard enough, without even starting to think about health problems 🤦‍♀️ Thanks for the advice re: retirement application. So far though, it seems to be quite straightforward. I shouldn’t speak too soon!

I hope you are able to have an appointment soon for your cataract surgery, fingers crossed for you.

Take care of yourself Osh gosh.

Sue x

[Oshgosh in reply to Susieliz39]

I’ve just written a long post,it’s disa’,so will try again later,take care,keep a keen eye on the retirement process x

[Knitmum in reply to Oshgosh]

Hi thanks everyone who has taken the time to reply ,i had a long chat with a BLF nurse this morning and now have some names of people to contact for info will be getting an appointment with the Dr/nurse I hope,trying to be positive takecareKnitmumx

[Bkin in reply to Knitmum]

That's great news, good luck with your Dr/nurse appointment. x

[Oshgosh in reply to Knitmum]

It’s a difficult time for you.You’re having to deal with the practical stuff regarding your illness.

You also hav to deal with the emotional impact of what is happening to you.

I know from experience how hard it is.

Don google,stick to BLF,there’s also a form on HU ITs not as bust for forum,but if you ask a question,some one will usually get back to you.

If you are given a helpline to an ILD nurse advice helpline,please use it.you quite French get through to an answerphone,but they also get back to you.

Even if they can’t help the information goes on your notes.

Please private message me if you want to,I’ll try to help if I an

[sassy59]

Hope the replies help Knitmum and you hear from others soon. Welcome to the forum. Good to meet you. Xxxx

[2greys]

Hi Knitmum

Perhaps this might help a little, luckily Fibrotic NSIP has a much better prognosis than IPF does.

pulmonaryfibrosisnow.org/20...

[Hidden]

Hi Knitmum,I'm new here too and have NSIP as well. I've struggled to find information on the condition but my consultant gave me an information leaflet which did help, maybe you could ask if they have the same.

Best wishes

[Alberta56]

Welcome to the forum, Knitmum. Sorry I can't help you, but please stay on this forum. There are others who should be able to help you.

[Izb1]

Hi Knitmum and welcome to the site. Cant help with your condition but others with the same will x

[kibera]

I was initially diagnosed with IPF, I then had the 6 minute walking test, breathing tests and at my next appointment told I had Hypersensitivity Pneumonitis, which is similar to what you have as its an Interstitial Lung Disease. I was also told its nothing serious and we don't need to see you again (16 months ago).

I agree its extremely difficult to find out information about what we have. Does your consultant have an ILD nurse you can telephone, if so he/she may be able to help you with information.

My problems with breathlessness and fatigue have got a lot worse and my GP surgery have no understanding of HP - I was told to take anti-histamine tablets 'because its a bit like an allergy'. I now have a private appointment (14 July) to see an ILD consultant I don't have health insurance but it will be worth paying for proper health care.

[Susieliz39]

Yep me too! Diagnosed in November but just found out I have NSIP. I started mycophenolate two weeks ago and so far so good but worried sick about what the future may bring 🤷‍♀️Know you’re not alone, it can make the journey easier

Sue x

[Knitmum in reply to Susieliz39]

Hi thanks for the post are you doing ok? I feel a bit like this is not real,best advice do not Google had a long chat with blf nurse, helped its given me a place to start i am one of those people who have to get as much information as possible take care k nitmum

[Susieliz39 in reply to Knitmum]

Hi Knitmum

I agree about it all not being real, it will just take time for it to become our ‘new normal’. Thanks for the advice. I will ring the nurses too, as like you, I like to get my ducks in a row and know what I’m dealing with. I can only do that at my own pace though! Takes me a while to process each step.

I seem to be doing ok at the minute thanks. So far, I’m tolerating mycophenolate and walking everyday… it’s my new goal. I didn’t always have time when I was working but now obviously need to. Trying for 40000 steps a week.

Hope you are doing ok too, take care of yourself and let me know how you’re going on. Sue x

[Debs_ALUK Partner British Lung Foundation]

Hi Knitmum

Welcome to our forum. If you feel you would benefit from a chat with one of our nurses about your diagnosis , don't hesitate to call on 03000 030 555.

Take care

Debs

[Caspiana]

Hi Knitmum 😀

I'm really sorry to hear about your diagnosis. I take Cellcept 500mg daily. Basically it used to suppress the immune system in order to lessen inflammation. Do you take any other drugs besides this? And I assume your doctor has recommended anti-acid medications , as Gastroesophageal reflux disease seems to common amongst our IPF friends. How about steroids? Actually most medication has some kind of side effect especially when taken long term but for some it's mild , others extreme and some don't have any at all.

You are not alone. 😊

Cas xx 🍀🌿

[Knitmum in reply to Caspiana]

Hi Cas thanks for your reply i went to the nurse on Friday and had a long chat she is going to get in touch with the respritry nurse and the physios and as you suggested gave me an antacids to take,my cough is bad today I think it's the weather so close and thundery i think this forum and hearing from everyone makes me feel not quite as alone it really is good to talk to someone who understands.best wishes to all knitmum xx