hello everyone .. I went to see the lung specialist at the London hospital. I had another lung function which was better than the last one . I don'thave IPF but i do have
Nonspecific interstitial pneumonia (NSIP) is a rare disorder that affects the tissue that surrounds and separates the tiny air sacs of the lungs. These air sacs, called the alveoli, are where the exchange of oxygen and carbon dioxide takes place between the lungs and the bloodstream.
The condition, which is part of a group of disorders known collectively as interstitial lung disease, causes inflammation and scarring of the lung tissue and sufferers have an average life expectancy of between just three and five years.
The lung scarring that occurs in interstitial lung disease can't be reversed, and treatment will not always be effective in stopping the ultimate progression of the disease. Some treatments may improve symptoms temporarily or slow the disease's progress.
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Debs6129
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Bless you, That must have been so hard to hear Deb's. I really don't know what to say. Except, that i am sorry for you, having to go through that. Medical research is, though, coming up with New treatments all the time. I hope you can somehow, keep a little positivity and be able to enjoy life a little. 😊🌻✌️my best thoughts to you.
So sorry to read your news. You do seem remarkably together and knowledgeable with a very good grasp of your condition. I hope you have a good network of family and friends. And that your doctors inspire confidence. I am always a believer in getting an accurate diagnosis. Even if it not good news I think it helps to know what we are faced with. Welcome to the Zebra (rare diseases) club. A club that no one wants to join! This is a very warm and friendly forum and you are not alone. The huge advantage of a community like this is that because of the numbers of members there are others with your condition. And hopefully they will respond.
All the best and keep us informed of your progress and treatments.
Dear Debs,you are very knowledgeable about your condition and i am sure that there is another lady on here with a similar condition,i am reluctant for privacy reason to mention her name but i feel sure she may well contact you,so you are definitely not alone in the 'Zebra' club that Katinka has mentioned.i do hope there are medications akin to the treatment of IPF that can slow and contain the progress of the fibrosis element of your condition.but regardless of our ignorance we are always here to support you,,,,,,,,,,,,,very best wishes Ski's and Scruffy cat oh and sorry Welcome x
Very sorry to hear you’ve had bad news about your lung condition. As Skis says, someone here has talked about something similar before....she’ll maybe be along soon, to compare thoughts and feelings, and symptoms, I’m sure.
Just remember life is for living, so get yourself sorted for some good times! So often these estimates are wrong....plenty here will tell you that....and treatment is developing all the time. Good luck 💞
Hi Debs, sorry to hear your news, I was also recently told I have nsip, or something similar, Dr are still trying to decide. When I looked it up I read that the life expectancy was 90% to 5 years and then not so good to 10,but I've been told you can improve things a lot by getting fitter and acting quickly when you have an infection,in my case also loose weight. Things can change a lot in 5 to 10 years. I just googled nsip and looked at a few articles, some British some American, all seemed to say the same thing.
Dear Debs, I ‘m sorry to hear your diagnosis, I know how you must feel because I’ve also got interstitial Lung disease. The consultant told me not to go on the internet to read about it as I would only frighten myself, but gave me a leaflet for the British Lung Foundation. She told me that there’s been a lot of research into the condition in the last couple of years and new treatments are evolving. So Debs, hang in there and try to stay positive, every case is different so don’t take any notice of three to five years. When I first posted on this forum I was devastated because of my diagnosis but after hearing and reading about others I feel much more positive. Have you got a supportive family, it helps greatly if they understand your condition. My husband goes to every appointment with me and listens to everything they say. which also helps us both to talk to each other if I am worried about it. I find the best thing for me is keeping my mind busy as it stops me worrying as much. Keep updating us about your condition Debs and remember you are not alone.
hi megs52. no i havent really got an support my mum can't help me cos she has Alzheimer's and I'm her carer. I have 2 boys I lives with me but he has special needs and the other one lives in maidstone and he has a lot to do he works full time and he partner works partime. plus they have to girls. I have 2 sisters one has a mental health issue so she can't help the other sister work full time as a nurse. so really I have no one most of my friends have thier own problems.
Hi Debs, I felt so sorry to hear your situation. You sound as if you need someone to help care for you. Have you looked into the possibility of whether care is available for yourself. I used to have home care as I have a lot of other things going on as well as ILD. I had a small contribution to make towards it, but when we managed to pay the mortgage off my contribution was increased considerably. I decided to move onto Direct Payments. I was assessed as needing help and was allocated X amount towards it plus my contribution. It’s a great way of getting the kind of help you need and want. You actually interview the carers, discuss the kind of jobs you would like doing, it is a particularly good system if you are lonely as the carer will take you out to visit somewhere or take you shopping. I found it a brilliant help as you can become isolated when you are too exhausted after getting ready to take yourself out. You have a 3 month trial with the carer which works both ways before it becomes permanent. My first one didn’t work out. The next lady I interviewed I knew straight away that we would gel. She helped me for five years, did household jobs, prepared dinner so it just needed to go in the slow cooker or oven. She worked for me for 5 years and we became good friends. When my husband retired we decided we would manage without the help and my husband does most things. He doesn’t get carers allowance, but we decided we couldn’t afford to carry on paying our contribution now we both get the state pension. I also think even though your sister works she still has as much responsibility as you for making sure your mother is getting help or respite care to give you a break. Sorry this is so long Debs but your situation upset me. We all need some support.
Try to find out if your nsip is to do with your immune system attacking your body. Mine is and I have meds which slow it down, so hopefully a longer life . I have antisynthetase syndrome.
Hi Titchykath, I have been told my Interstitial Lung Disease is secondary to autoimmune condition. They can’t decide which one though as it is not leading in one particular direction. The consultant is sending me to see some specialists who have a particular interest in rare lung conditions. She has said if they can’t find what’s causing it they can’t treat it. In the six months between my Lung function tests my gas transfer levels have dropped from 38.7% to 36.3%. What medication do you take to slow it down.
I have an appointment with these specialists on 28th June.
I am on mycophenolate 750g twice a day, also on 5mg of pred. The graph has shown some improvement , so it seems to have slowed down the progression. I have anti-PL7 positive with anti-Ro52 antibodies.NSIP/OP overlap. Fvc of 83% TLCO 48%. Not sure what it all means , but consultants say I’m going in the right direction. Not getting worse😀
Debs, Is it Nonspecific Interstitial Pneumonia or Nonspecific Interstitial Pneumonitis? One is as a result of having pneumonia and the other is general inflammation of an unknown cause.
I have nonspecific interstitial pneumonitis (NSIP) I’ve seen various consultants, had all the tests and scans, medication etc...
Saw my consultant again yesterday. Basically some people progress and others stabilise. Lung function tests and the CT scans hold the key to whether it has/has not progressed.
Hello Debs😃 I'm glad that you have a diagnosis, it's half the battle. I have NSIP also and am on 3 g of mycophenolate per day, along with 10 mg of prednisone and an antibiotic. I live in southeastern US. I hope you are getting help with your many responsibilities. Pushing yourself isn't going to help. Are you on oxygen? You are the first person with NSIP that I've communicated with since being diagnosed. I felt like crying.
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Aspergillosis and Hyperinflated lungs. 
Permanent Lung Scarring from Pneumonia
Fit to Fly certificate /test 
Mycophenolate instead of Perfinedine or Nintenanib? 
Decreasing supplemental oxygen…
