Living with cellular NSIP

[Kathleen101]

Hi. I was recently diagnosed with cellular NSIP. I was an active healthy 50 year old last October when I started getting short of breath and a constant cough. I thought it was pnemonia and so did the doctor. After 4 round of antibiotics I wasn't better so they started looking at other options. I had further tests and eventually a VATS lung biopsy. This process took way too long, however I did finally get the diagnosis in May. During the time I was waiting for a diagnosis, I couldn't walk 20 feet without getting very short of breath. I would spend hours every evening coughing constantly. I have been on prednisone now for 2 months. I have had some improvement , however my lung specialists feels I have not improved as much as expected at this point. He is looking to start me on Azathioprine. I am worried about taking this medication as it puts you at high risk for cancer. He is scheduling a CAT scan to check my progress and I am hoping he will say there is enough improvement that I can just continue with the prednisone. We still don't know what caused this in me. I have a bad back and have been on Celebrex for my back since 1989 and it is possible one of my back conditions could be the cause, but the dr said I may just have the idiopathic kind meaning there is no known cause. We are still trying to find out for sure. Either way, it doesn't change the fact that I have this nor does it change the course of treatment. If anyone else out there has this and can tell me how long it took to feel like you have your lung capacity back, I'd love to hear from you. It is so good to find somewhere to share similar experiences with.

[GeorginaS]

Hi I sent you a private message. I too have nonspecific interstitial pneumonitis. There are only a few of us in here. I've not been told whether mine is cellular or fibrotic. I believe exercise is key to increasing lung capacity and breathing exercises too. Hopefully you have been offered respiratory physio and rehabilitation?

I'm on gastro resistant Prednisolone plus alendronic acid and Adcal d3 as steroids affect bone density. I'm also on lots of medication to prevent acid reflux.

They can't identify why mind started although I think it was because I had three viruses in 2016. Over the past 18 months I've seen three consultants and their views ranged from asthma, to a habit cough to NSIP.

I think they just don't know why these things start. Please see my private message too. x

[PLS1111]

Kathleen101, For the past 7 months I've been dealing with almost exactly the same thing. Started out with Dr. saying I had ear infection, which I probably did, to sinus, bronchitis, pneumonia and finally, after a lung biopsy I was diagnosed with NSIP. I just began a drug that has worked for some to slow or stop progression called Cellcept. In my case they are thinking auto immune disease but I don't think they really know what caused it. My mom was diagnosed with Pulmonary Fibrosis, that sent off lots of red flags, could be this is what she actually had.

[PLS1111]

Sorry, I got distracted and it posted my reply I wasn't done. So Cellcept is a drug they give to transplant patience. So the goal is to reduce the steroids, I am down to 10 mgs now, and increase the Cellcept over time. In beginning stages I will keep you posted. If you've experienced this drug or anything similar I'd appreciate any input. Thanks

[LoveBeingaNanny]

Hi, I have recently been diagnosed with NSIP, not been told whether it is Cellular or Fibrotic. Is this something I should ask at my next appointment? I didn't realise there were two types. Mine has been caused by an antibiotic called Nitrofurantoin used for the treatment of UTI's

After a two week stay in hospital last year, I was given a bronchoalveolar lavage (BAL) (awful experience). I was on oxygen for 8 months 1 - 4 litres, but then put onto Prednisolone and have just finished.

I receive regular CT scans and Respiratory Function Tests.