Hello. My names Jyoti I'm 25 years old and have recently been diagnosed with mixed NSIP. And I don't know were it starts and ends I'm due to start treatment of Cyclophosphamide and steroids soon. And in all honesty I'm clueless and a little frightened. Anybody else with the same or similar disease because apparently it's quite rare. Thank you for reading :)

18 Replies

  • Hi I am sorry to hear about your diagnosis What are MCTD and NSIP please? x

  • Non-specific interstitial pneumonia (NSIP) is a form of idiopathic interstitial pneumonia.

    Patients with an NSIP histologic pattern on biopsy have a better prognosis than those with usual interstitial pneumonia (UIP). There are two variants of NSIP: cellular and fibrosing. The cellular variant features chronic inflammatory cells with minimal collagen deposition while the fibrosing pattern consists of diffuse interstitial fibrosis with fewer inflammatory cells. In contrast to UIP, NSIP has little or no honeycomb change, and fibroblast foci are scant or absent

  • Hi MCTD is mixed connective tissue disease. It's a overlap disease of systematic lupus. Sjogren and rheumatoid.

    Nsip stands for non specific insestuial pneumonitis.

  • Oh thanks - I'm none the wiser though :) x

  • I have restrictive lung disease with fibrosis and a few other things. When I looked it up I did notice that one of the heart tablets I took has been linked to this condition. Which would explain why I was taken off it some years back.

    Did/do you work in an industrial or farm environment?

  • I used to have a cockatoo when. I was 10, they first diagnosed me with EAA bird fancier lungs. It's progressed from there a new cell was found from my broncosopy and they said it was my rheumatoid /lupus element from my mctd that is affecting my lungs now

  • I worked with asbestos, wood dust, MDF and silica and used to breed budgies. Suffered bronciatas from an early age. I have arthritis and a few heart conditions to help it all along.

    It does seem that so many things can upset the lungs. but only in the last few years they are linking them.

    My sister has Lupus and has Sleep apnoea and kidneys problems.

    Be well

  • Hi, as you know I have NSIP too, it is very rare which can make things scary and quite difficult. I advise that you learn as much as you can about the condition (without scaring yourself silly with Dr Google!!). It sounds like you are being looked after well, feel free to message me if you want to chat more.

    Mrs S xx

  • Lol I'm trying to leave Google out with the diagnosis. Because Google always tells me I'm dying, I have all the letters from the hospital just so confused by them I did ask my specialist to put them down in leemans terms so I could understand but nope. So I contacted British lung foundation and they referred me here

  • Lol I'm trying to leave Google out with the diagnosis. Because Google always tells me I'm dying, I have all the letters from the hospital just so confused by them I did ask my specialist to put them down in leemans terms so I could understand but nope. So I contacted British lung foundation and they referred me here

  • To be honest there isn't much information out there, do you have access to a specialist nurse? The nurse that's attatched to our clinic gave me a sheet with some info, but it's difficult to find much out. This is a good website, has decent descriptions which is helpful when trying to explain your condition to friends/family

  • No just the specialist at the hospital, I will be seeing a nurse 2mo maybe she will give me more information hopefully.

  • I have nsip but without any connective tissue disease im on immunosuppressents and steroids lung function tests 23% im newly diagnosed i also have cardiovascular disease had chat with gp this mrn its so frustrating as theyve no idea why i got it or really how to treat it i havent been able to tolerate the steroids so now on very low constant dose. I like to know facts and make decisions based on info but its frustrating when noone can give me prognosis. Most people on here have copd it sumtimes dif tofind a similar condition. But all we can do is try b positive n stay healthy x

  • I'm sorry to hear your frustration and I completely understand were you come from, people in my family have COPD and in comparison there is non. I have a lung volume of 20% since treatment with honey combing of both lungs. Also on ambulatory oxygen as hard as it is we have to stay postive even when our body is telling us no. Sometimes it's really hard and with it being so rare it's isolation.

    Suppose one day there will be hope for us but till then we live to survive x

    Sorry it's taken so long to reply I forgot about this lol

    Jo x

  • Hello Jyoti

    Sorry to hear about your diagnosis. I have Sjogren's Syndrome which has caused me to have NSIP (pulmonary fibrosis of the non idiopathic kind). If you do have pulmonary fibrosis NSIP),this has a better prognosis than IPF. Unfortunately I also have Pulmonary hyperternsion (also caused by Sjogren's) which is another rare disease! This causes the artery between the heart and lungs.

    Like others have said, it pays to get to understand your disease but stick to reputable sites. I am lucky to be getting good treatment from my Rheumatologist and the specialist NSIL and PH teams at the Royal Brompton.

    I do hope you are able to get good quality care. Feel free to get back to me personally if it helps.


  • Hi Maggie,

    I have mixed NSIP linked to SLE from MCTD also have Sjogrens one of my many treasures lol, my doctors call me "extreme" but I take that as a compliment lol!

    I stopped looking at Google, although the death threats from google were also given from my Specialists from Sollihul.

    The team I'm currently under are amazing and always explain to me in detail all procedures, treatmentso and after care and everything. Although from this post i quite rapidly deteriorated, but now I know why.

    Hopefully after my lung transplant assessment I can look up and forward.

    Hope you are well.

    Jo x

  • Hi Jyoti

    I know its some time since you originally posted, but I wanted to see how you were getting on with the treatment ? All well I hope,



  • Hello Nemo, I finished my treatment in October last year the great news is I'm stabilised, however there is more damage then originally thought. I now have a lung volume of 20% and require ambulatory oxygen, also found out that I have honeycombing of both lungs (right more so then left) and I've been urgently referred for a lung transplant assessment which I attended on the 30th August. My dieseas aggressively is trying to get the best of me.

    Thank you for asking, hope all is well

    Jo x

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