Thank you for talking about NSIP. My father just got diagnosed with NSIP, and you answered the questions I had regarding medication. Appreciate your videos.
I don't have inflammation only scarring in the upper lobes. The right lung more than left. I'm taking Ofev twice a day. Fibrosis is stable. I have Sarcoidosis/ hypersensitivity pneumonitis. Only use oxygen when I go to pulmonary rehab. I moved from a house that had mold in the basement & been doing good since then🙏🏾♥️ Thank you for these videos!
Can you please talk about successful treatment for Antisynthetase syndrome with ILD and prognosis. Is life expectancy worse or better than idiopathic pulmonary fibrosis?
yes, the radiologist can estimate it, and there we are increasingly using more and more AI tools to automatically quantify the degree of fibrosis on chest CT scans. The technology is not yet perfect but improving rapidly
My mom has seronegative RA later diagnosed with ILD, predominantly cellular NSIP with 5-6% fibrosis/interstitial septal thickening, and 15% GGO/inflammatory lesions of the total lung volume. She is currently being treated with corticosteroids (tapered down to 5 mg/day) and Upadacitinib. Can we expect for her to live full life? Or I want to know if the NSIP can be treated completely? Please advice. The extent of inflammation is very slightly reduced over the course of 6 months in HRCT and fibrotic components are stable, no abnormalities in lung architecture as well. Serial PFTs are normal with around 67% DLCO (my country has the worst AQI in the world so I was told DLCO is normal given the air we ingest in a regular basis) and over 90% FVC.
Hello doctor my wife has fibrotic nsip and has in the last 2 months been in hospital twice fist time she received oxygen for her breathlessness for a week then was sent home, the second time they gave large dose of steroids and oxygen and this time was sent home with oxygen at home and a portable oxygen for when going out, she is on oxygen all the time and needs it otherwise her oxygen level drops and has been taking steroids for about 6months. They suspect worsening nsip but when I ask them will my wife die from this disease they just tell me we can treat it, the oxygen nurse just said don’t believe what you read on google, google says some people with fibrotic nsip die 5 years after diagnosis some live longer. My wife used to smoke so I assume this may have caused the nsip. My question: can my wife be treated and actually not need oxygen therapy and can this disease go into remission basically can she get better.
@@SamuelCovert well she has supplemental oxygen 24 hours a day and is taking 2 different medications for the disease, as soon as she moves or does anything her blood oxygen levels drop quite a bit she also has diabetes type 2 which she takes insulin twice a day for, herniated discs in lower back and frozen shoulder but generally she is doing well as long as she has a constant supply of oxygen thank you for asking. I do get annoyed when asking the doctors if my wife could eventually die from this disease they reply with ( we can treat this ) I also asked the oxygen nurse if my wife has fibrotic NSIP and she said yes, I then said well I have read that you can die from fibrotic nsip 5 to 14 years after diagnosis and the nurse then told me not to believe everything I read online because there are lots of different types of the disease, but I do know that my wife has scarring in her lungs.
@@kennethturner1481 really sad to hear that your wife struggling with this awful disease, still i don't know my mother was in end stage when she diagnosed but she was out of breath and her lungs almost 70% scarred so it means fibrotic NSIP will scar the lungs and she was 68 yrs old so age really matters here in terms of progression, sorry to ask your wife's age, if she is below 60 no need to worry about it pulmonary rehabilitation and oxygen therapy eventually reduce or stop the scar. Main thing you have to keep in mind don't let her get infected again. Try to move to greenery place which is less air pollution.
@@SamuelCovert sorry to hear about your mother, my wife does struggle with breathlessness and is age 40 years so hopefully she will live for many years to come.
This was helpful as I was skeptical about mycophenolate and steroids to start and wondered about the treatment of immune suppressants. Thank you
Thank you for talking about NSIP. My father just got diagnosed with NSIP, and you answered the questions I had regarding medication. Appreciate your videos.
How is your father now? Is it fibrotic type or cellular?
Thank you very much for the video too. This is what everyone is worried about.
I don't have inflammation only scarring in the upper lobes. The right lung more than left. I'm taking Ofev twice a day. Fibrosis is stable. I have Sarcoidosis/ hypersensitivity pneumonitis. Only use oxygen when I go to pulmonary rehab. I moved from a house that had mold in the basement & been doing good since then🙏🏾♥️ Thank you for these videos!
@@cookie-gb3xn how are you now?
Very good advice. Thank you. 🙏
Thank you very informative
Explaing very clearly
Can you please talk about successful treatment for Antisynthetase syndrome with ILD and prognosis. Is life expectancy worse or better than idiopathic pulmonary fibrosis?
thank you
What if steroids are not reducing the inflammation as they should? Do steroids not work with some people and why is that?
is there a quantitative way to measure percentage of tissue scar through any tests or xray or HRCT?
yes, the radiologist can estimate it, and there we are increasingly using more and more AI tools to automatically quantify the degree of fibrosis on chest CT scans. The technology is not yet perfect but improving rapidly
My mom has seronegative RA later diagnosed with ILD, predominantly cellular NSIP with 5-6% fibrosis/interstitial septal thickening, and 15% GGO/inflammatory lesions of the total lung volume. She is currently being treated with corticosteroids (tapered down to 5 mg/day) and Upadacitinib. Can we expect for her to live full life? Or I want to know if the NSIP can be treated completely? Please advice. The extent of inflammation is very slightly reduced over the course of 6 months in HRCT and fibrotic components are stable, no abnormalities in lung architecture as well. Serial PFTs are normal with around 67% DLCO (my country has the worst AQI in the world so I was told DLCO is normal given the air we ingest in a regular basis) and over 90% FVC.
How is your mother now? My mother died from fibrotic type of NSIP
Is the Thyroid Gland sometimes associated with Fibrosis?
@@annaasprou6976 yes, our doctor said it is associated with thyroid problem especially in women
Can ctd related nsip controlled? What is life expectancy? Can they live full life?
Hi, ILD-NSIP - is hereditary ?
@@madankrishna4059 no
Agreed sir
Satisfied of starting immunosuppresant antifibrolitc steroid for good prognosis....Am i right sir
Hello doctor my wife has fibrotic nsip and has in the last 2 months been in hospital twice fist time she received oxygen for her breathlessness for a week then was sent home, the second time they gave large dose of steroids and oxygen and this time was sent home with oxygen at home and a portable oxygen for when going out, she is on oxygen all the time and needs it otherwise her oxygen level drops and has been taking steroids for about 6months. They suspect worsening nsip but when I ask them will my wife die from this disease they just tell me we can treat it, the oxygen nurse just said don’t believe what you read on google, google says some people with fibrotic nsip die 5 years after diagnosis some live longer. My wife used to smoke so I assume this may have caused the nsip. My question: can my wife be treated and actually not need oxygen therapy and can this disease go into remission basically can she get better.
How is your wife now? My mother died from fibrotic type NSIP
@@SamuelCovert well she has supplemental oxygen 24 hours a day and is taking 2 different medications for the disease, as soon as she moves or does anything her blood oxygen levels drop quite a bit she also has diabetes type 2 which she takes insulin twice a day for, herniated discs in lower back and frozen shoulder but generally she is doing well as long as she has a constant supply of oxygen thank you for asking. I do get annoyed when asking the doctors if my wife could eventually die from this disease they reply with ( we can treat this ) I also asked the oxygen nurse if my wife has fibrotic NSIP and she said yes, I then said well I have read that you can die from fibrotic nsip 5 to 14 years after diagnosis and the nurse then told me not to believe everything I read online because there are lots of different types of the disease, but I do know that my wife has scarring in her lungs.
@@kennethturner1481 really sad to hear that your wife struggling with this awful disease, still i don't know my mother was in end stage when she diagnosed but she was out of breath and her lungs almost 70% scarred so it means fibrotic NSIP will scar the lungs and she was 68 yrs old so age really matters here in terms of progression, sorry to ask your wife's age, if she is below 60 no need to worry about it pulmonary rehabilitation and oxygen therapy eventually reduce or stop the scar. Main thing you have to keep in mind don't let her get infected again. Try to move to greenery place which is less air pollution.
@@SamuelCovert sorry to hear about your mother, my wife does struggle with breathlessness and is age 40 years so hopefully she will live for many years to come.
@@kennethturner1481 how's your wife now? Hope she is okay.
Is she frequently getting infection?
My father got COVID lungs fibrosis. Doctor you think they will discover a New treatment can heal the lungs in next few years? We still have some hope
I have the same and wonder the same thing.
You are cute! ❤