NSIP diagnosis

[Letitgo]

I’m new here. My husband has been off sick for 18 mths, struggling for 3 years. Nothing could be found for his symptoms so they thought it was anxiety. After continual lung infections for 3 months he had CT and referral. CT report says ILD with NSIP most likely. Haven’t seen consultant again since seen briefly in Jan day after CT so before report done. He viewed CT and said it was ILD. He’s had bronchcoscopy, endoscopy, bloods and now waiting lung function tests. Endoscopy was clear apart from gastritis. Bloods all clear. After 6 weeks bronchcoscopy results are still not back. He had 6 sweeps and samples taken. In mean time he is very house bound. Exertion whether emotional or physical makes him breathless, it has been to point had to call an ambulance twice and a&e visit once. No meds until see consultant. No consultant until all tests done and results back. Been 2 months now and looks like another month to go. No idea what this means. Can he be cured. Can he get his life back. Will he work again. I’m assuming he will lose his job but hoping he can get some kind of a life back. He’s 49. Anyone out there who can share their experience of nsip diagnosis? Sorry for so much info.

[Tugun]

Hi - Unfortunately I don't know anything about NSIP but I do know that the people here have a great deal of experience and information so hopefully they'll be able to help you both. Welcome to the site.

[Petal70]

Hi, I'm so sorry to hear you're both going through such a tough time. I was diagnosed with NSIP in 2015 aged 45. The lung disease came as a special little add on with my Lupus. NSPI falls under the umbrella of Pulmonary Fibrosis but it's quite different and slow moving not like some other lung diseases. I was in a pretty rough state by the time I started my treatment and I couldn't take more than a few steps without becoming breathless which was so scary and I found that the hardest thing was staying calm and not panicking! There are effective treatments out there and I take Azathioprine daily for my lungs. When I was first diagnosed I also took a lot of steroids and because my health was very poor my consultant prescribed a chemotherapy drug called Cyclophosphomide - which again scared the pants off me and it wasn't very nice but it did the job. I was made redundant which was upsetting but it really was the best thing for me. It has taken a long time but I am back on my feet and working full time albeit in a very different job than the one I was in and that really isn't a bad thing either. It's going to take time and things will be better once he has a final diagnosis and starts treatment. The one thing I found helpful was having a chat with one of the nurses on the BLF helpline - they're great and so experienced and so kind. You're husband will get his life back but it's going to take some time. I hope that all the results come through for him soon and he can start treatment. Good luck xx

[winfar]

So sorry to hear your husband is so ill. I am also ild nsip and have been for many years. I was first told i was ipf but never received any treatment, but i am 84 years old so quite a difference in ages there. At the moment i am on Azythromicin on monday wednesday and friday and also carbocystine which is medication i had to ask my consultant to give me. There will be others on this site with the same diagnosis and hopefully someone will be able to give you more support as it seems to me that people who live in different areas receive different treatments so it is a post code lottery. I hope you don’t have to wait too long and your husband receives the help he needs.

[katieoxo60]

Sorry your Husband is ill, sadly the process to confirm certain illnesses is quite slow . Hopefully it will result in the best treatment possible and the waiting will have been worth it. Prepare yourself for a long term treatment as many lung illnesses are not curable , but managable. Things like stress can make them worse too, although activity makes people breathless we still need to do exercise to expand the lungs. British lung foundation have a good exercise CD for lung conditions and on line there are some chair exercises. These would of course not be suitable till all the tests are done ect. I could only walk about twenty feet when first went to the consultant with my lung condition, that was about ten years ago so there is hope for your husband once treatment begins. Take care both and hopefully in a few months time you will be looking back on this and looking forward to your future.

[micktheknife]

I was diagnosed with a crossover condition of HP(hypersensitivity pneumonitis)/NSIP ten years ago. It can be really tough to be on this rollercoaster.

One of the first things is to look for organic allergens in the home and work- do you have pets? birds, dogs, cats etc? I know most people with pets are very attached to them but they can be a problem.

Occupational factors can be part of this too, for example with HP, farmers can be affected by mildew in hay.

You may want to have a really good look in the attic (if you have one)to see that you don't have birds in there - guano dust causes lots of issues.

I've been treated with Azathioprine, Cyclophosphamide, Tacrolimus, and have just moved on to Mycophenolate - along with the ubiquitous steroids of course.

I've only just moved back onto Mycophenylate after a couple of years on Tacrolimus - had an issue with the shakes in my extremities (known issue).

I'm lucky to being mostly stable apart from the odd crash and recovery. Home oxygen is also a recent addition for me and this does make a difference when I need any level of exertion.

[Letitgo]

Thank you for so many replies everyone. Nice to feel less alone but wish no one had to suffer like this. We don’t have pets. We did have two guinea pigs but sadly not anymore. The loft is clear, basic 1970’s house, no interesting attic! Safe office job. Nothing that makes sense. I broke a mercury thermometer some years ago but I’m sure it was all caught and I disposed of it safely. Rack your brains for clues don’t we but I have nothing. He does have stiff hands in the morning but all ra tests neg. His finger and toe nails are clubbed which is apparently a sign of a prob. He has a dropped foot so his mobility is impaired anyway so hard to know how much of breathlessness is the effort involved in walking anyway and how much is from this new lung problem. We are terrified what this all means but massively reassuring that you’ve all had medication and are living your lives successfully with ILD. Just being able to get him out would be a huge win right now. Best wishes to you all and thank you again for responding x

[JudithC]

Hi, I was diagnosed with NSIP 2 years ago. I was in hospital for 17 days. It has changed my life completely but not entirely in a bad way! I have just come off the steroids but because of the prolonged use I have Osteopania so taking meds for that now. My consultant has recently changed which for me was a bit of a set back as the other had been with me from the outset. I had six months of cyclophosphamide treatments when I came out of hospital.

I am 60 this year and still work, albeit only 4 days per week now and I get breathless and tired and some days I don't want to get out if bed but I paint a smile on and do what I have to do. I see myself as fortunate that I can at least do that! I do think our partners have a lot to contend with and it can be hard on you. My hubby has MS so we make a right pair!! Keep your chin up, try to remain positive and look for the light at the end of the tunnel!!!

[Letitgo]

Thanks Judith. Brilliant that you still work. I am hoping that once hubby is treated he can get out and about again. Several times his breathlessness has made him very anxious so it’s hard to know how much is the disease and how much is the fear. He gets breathless so easily it’s made him lose confidence in being out in the world. Getting some kind of life back would be amazing. I darent hope that he could work again, seems greedy at the moment. Once we have a diagnosis confirmed and some treatment we can work out what our new life will look like, or who knows, maybe we will go back to what life used to be like... maybe it isn’t so bad but the fear is magnifying his problems, we just don’t know. 3 months of waiting for answers after ct seems so cruel but I gather it’s normal wth diagnosing an ILD. So many tests and such long wait times for results. Thanks for the interest everyone. So reassuring to talk to those who know about ILD x x

[Titchykath]

I had to give up work because of my PF. I missed it at first, but now really happy to be at home. I was in depression last year, even though it’s only this year that I have admitted to this fact. I now try to keep active at least every other day. If I could keep a part time job going I would, but I don’t know how I am going to be day by day. I am now 57 was first diagnosed with HP, but 18months down the line re diagnosed via lots of blood tests I have antisynthetase syndrome which is very rare. My immune system is attacking my lungs predominantly, also muscles, skin, nails . But treatment is available, it will not cure it but will hopefully slow it down in the long term. My lungs are scarred in the bottom half.

But be positive and you and your hubby will get a somewhat normal life. Enjoy 💛👱🏻‍♀️

[Letitgo]

Thank you Titchykath. Hubby still hopes to get back to work. I can’t see it being likely. He tires so fast at mo and struggles with breathlessness so he doesn’t go out at all. Hope when treated he can get out. How long did it take to diagnose you accurately and what tests did you have? They are struggling to work out what’s going on. His tests all come back neg. he has severe muscle wasting as well and surely must be related.