ILD

[JudithC]

Hello I'm a 57 year old woman with non specific interstitial pneumonitis. This came as a huge shock and I've been off work for 6 months. Just on a phased return currently. It's been really hard and continues to be hard work fitting work , exercise and rest into my day. However I'm determined not to let this beat me and next year I want to do some fund raising for BLF. I've always wanted to do Hadrians Wall but just want to do it with my hubby not necessarily as part of a group. Does anyone have any experience of doing this and share any advice on how they managed it. I'm lucky enough to live in Carlisle so am very close to the wall to start with! Any advice gratefully received!

Judith

[GeorginaS]

Morning Judith I too have nonspecific interstitial pneumonitis. Diagnosed about two months ago. If you search for it my post and a couple of others will come up. We all seem to be getting different drugs and treatment!

I live in Berkshire so nowhere near Hadrian's Wall.

I'm just wondering what treatment you are having at the moment? x

[JudithC in reply to GeorginaS]

Hi Georgina I've responded to your other message. I'm currently on prednisilone and have had two courses of cyclophosphomide. Number 3 is on Monday. Ive had 6 weeks of pulmonary rehabilitation at the hospital which helped me a lot. Due to the steroids and probably part of my age I have osteoperenia which is thinning bones but not osteoporosis yet hiwever the treatment is the same do I'm taking calcium and vitamin D and some other horrible tablet which I have once a week!

[GeorginaS in reply to JudithC]

Hi The horrible one is alendronic acid. My tablet is huge but a friend told me there are smaller ones my GP could prescribe. Sounds like your rehabilitation worked. I was invited to a group chat and then sent away. I'll be called back apparently before Christmas! I've been waiting since March! I'm currently on 15 mg of Prednisolone. Got the gastro resistant ones eventually. Reduced to 20mg after two weeks. Next week I should hear the next part of the treatment plan.

[Katinka46]

Yes, yes! Do the wall. Brilliant. Use one of the baggage carrying firms to take your over night stuff from one B&B to the next, so you only need to take a day rucksack. Very much looking forward to hearing how it goes.

[Hokeycokey]

Hi - I'm probably an early stage NSIP too, "thankfully" there aren't many of us on here. I have to have a biopsy to try and diagnose whether or not it definitely is

[JudithC]

Yes I gather we are a rare breed! I hope your biopsy goes ok. I haven't had one but I've had plenty of other tests. Currently on steroids and cyclophosphomide.

[Kathleen101]

I have NSIP as well. I am currently on 40mg of prednisone and vit D, and calcium and Actonel which is the once a week pill . the actonel is not a large pill and is easy to take. Starting a lung rehab program on sept 12th. Looking forward to that. So nice to have a support group online to share with as we are indeed a rare breed.

[JudithC in reply to Kathleen101]

We definitely are! I really enjoyed the rehab and I'm waiting for the local sports centre to get in touch as they run a continuation session which I feel I need to keep me motivated! How long have you had NSIP for?

[Kathleen101]

Hi JudithC. I became sick last October and was finally diagnosed in May of this year. That process took way too long... but at least we know what we are treating now.

[GeorginaS in reply to Kathleen101]

Hi Kathleen Morning! How did they diagnose you? I got my diagnosis by post after 18 months of misdiagnoses! Mine too us pneumonitis but no idea what type. Cellular is better than fibrotic apparently. I was on 40mg Prednisolone but then gradually reduced to 15mg. Seeing consultant tomorrow after more lung function tests last week. They are 'concerned' about my gas transfer. I'm just generally concerned 😜

[Kathleen101 in reply to GeorginaS]

They diagnosed me from the pathology of the VATS biopsy.

[JudithC]

For me it was February when I was rushed into hospital with what they thought initially was bilateral pneumonia. X-ray then revealed the scar tissue and they then said it was acute ip. However I did improve and diagnosis was changed to NSIP. I honestly thought I was going to die! I guess you are like the rest of us and totally shocked. I still have days where I I can't understand why this had happened to Me! Anyway it's good to have somewhere to talk yo people who are going through the same thing! X

[Joneswm]

Hi Judith. I have NSIP Fibrotic firm. I have been diagnosed nearly 2 years now. Unfortunately I needed to retire from my job as I was struggling more and more with fatigue. I have since been diagnosed with AF - atrial fibrillation. It's interesting to read how the treatment varies between patients. I am not on any regular medication, but do have Carbocisteine to take as when necessary. A back up course if Erdostine and emergency pack of antibiotics. I am on life long mess for my AF, anti coagulation and beta blockers. I seem to have a permanent cough and sputum. I have recently completed PR rehab, best thing for getting more oxygen into those scarred lungs !!! Waiting to start at local fitness centre on a follow course. Looking four wars. Nice to read posts from other NSIP members, as when I first joined site, couldn't find anyone. Best wishes to you and keep well. Wendy

[JudithC in reply to Joneswm]

Really good to make contact with other NSIP people. I feel less alone now! I think because this seems to be such a rare condition there are various treatments that are being used. Perhaps we are guinea pigs but all I know is that I am happy with my treatment so far although not a fan of the cyclophosphomide which I'm having again tomorrow. Anyway good to make contact and I'm sure we'll have lots of opportunities to compare notes!

Judith x

[JudithC]

That's me back from the hospital following my cyclophosphomide treatment. Feeling a bit shattered and a bit sick which they have given me tablets for. Am just having a lie down to see if it goes away without them. I've got enough stuff flowing through my body! Only 3 more treatments to go!

[GeorginaS]

Not had one... yet. I'll ask consultant tomorrow about his thoughts x

[Kathleen101]

Well as of today I am now on oxygen. I thought it would just be for extreme exertion like exercising, but apparently they want me on it to sleep and any time I am going to be walking around doing anything. The thing that pisses me off is that I am breathing better now than I was before starting treatment, so I definitely should have been on oxygen all those months that I was waiting for a diagnosis. How much damage was done to my body functioning like that for since October. Very frustrating. Feeling very overwhelmed. I guess I have to accept the fact that I really am quite sick. Mind over matter isn't going to work for this. I hate giving in to this. Feeling very emotional and depressed today. Quite an adjustment.

[GeorginaS in reply to Kathleen101]

Thanks for your message. I've replied earlier privately x

There are lots of people in here who are on oxygen and I'm sure they will be able to answer any questions you might have about it.

I was wondering if anyone gets oxygen as a ' temporary' supportive measure? Does anyone know?

[Kathleen101]

I sure hope this is temporary for me.

[JudithC]

I think it can be given as a temporary support but there are other issues such as informing your insurance company etc. Also if you are needing it for such a long period you will need to have storage! (I'm a health and safety officer for my sins!) I know when I was going out of hospital for the day we discussed supplementary oxygen but it was decided that there was a lot of paperwork to complete and if I because was going to be close to the hospital we decided against it. X