Diagnosed with Cellular Type Non-Specific Interstitial pneumonia in November 2016. Looking for others with this dx three to six months prior

I'm at home nowon 3l O2 (24/7) Enbrel shots 50mcg per week subcutaneous , 40mg prednisone /day. Arava 20mg/day. Morphin and many other meds. I want to know the earliest date that you as a patient went into remission, as my SaO2 seems to continue to fall instead of getting better. I need to find a good NSIP Support Group! XOXO ❤ 😘 🙏 Thank you for your help !

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  • Hi. I don't have the same condition but just wanted to welcome you to the forum. Hopefully other members will be of more help to you. :)

  • A very warm welcome to you Bon Bon. I'm afraid I won't be of much help to you as I'm not familiar with NSIP.

    Hopefully someone who knows about your condition will come on soon.

    In the meantime please feel free to join in any of the posts if want to. 🌺

  • Hello BonBon

    I do not have NSIP. But something maybe a bit similar: Obliterative Bronchiolitis. Similar in that it is unusual/rare, in the small airways and is fibrotic. I think NSIP is in the alveoli? I am sure there are others with it on this forum. You do seem to be getting treatment.

    All the best and keep us informed

    K

  • Hi Bon Bon. I have NSIP the fibrotic type, which was diagnosed late November 2015. Not sure if the prognosis, my Consultant says she doesn't know what my lungs will be like in 5 years, so 4 years and counting ! I'm still trying to accept how this has affected my life. Have had to give up work, due to fatigue and breathlessness. I'm not regular medication, just standby antibiotics and carbocisteine as and when. I have regular check ups and lung function tests. I know what we have is rare and find it frustrating that no one seems to know much about NSIP. I had sarcoidosis over 20 years ago which I had no treatment for and I'm convinced this illness is because of that. I've ask Consultant and she can't answer the question because there is nothing to compare it with ! I hope that you get answers and take care. Best Wishes Wendy.

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