1. < Lung Health

PF - Nonspecific Interstitial Pneumonia related to autoimmune

Posted by bleo @bleo, May 5, 2018

Hi. I’m 36yo Asian female diagnosed with NSIP 2 years ago related to my autoimmune disorder, which my doctors still unable to find out which type of disorder as they think it hasn’t fully blown out yet. It’s a condition under Interstitial Lung Disease / Pulmonary Fibrosis. I was on 40mg prednisone for about 10 months in 2016 and stopped for about 9 months in 2017 when my condition was stabilized. Then I had an episode of pneumonia during winter in Dec 2017 that got me hospitalized twice, and has made my condition worse with mild pulmonary hypertension. I became more breathless even short walks to the bathroom and during showers.

I’m now back in my own home country where the weather is warm but since the pneumonia, I have started back on 40mg prednisone in Feb and last month, I was also given 500mg Cellcept daily (2 tabs a day) as a steroid sparing agent so I could reduce my prednisone sooner. I’ve been advised by my docs not to travel for work, so I can now only work from home. So I’m now on these two main medication along with my other vitamins.

And I’m also on 24/7 oxygen now too. But it doesn’t really help when I’m moving because of my limited lung capacity that I can’t inhale very deep. What makes me breathless is when I cough really hard from my itchiness of my throat and whenever I needed to expel my mucus. And when I get breathless, my nails turn purple. Both my lower limbs occasionally get numb too and turn pale, which my doc tells me that it’s because I dont have enough oxygen in my body that can cause that to happen.

What scares me now are showers and toilet breaks. There are always risks of getting choked up and out of breaths if I couldn’t hold my coughs. I’ve been reading from researches and posts from others that mild exercise and breathing exercise helps. As much as I want to do so, I don’t like the feeling of coughing and seeing my SpO gets to as low as 80% while doing just slow walks of treadmill and deep inhalation makes me cough.

My question is - is there anyone out there with similar diagnosis (NSIP with autoimmune) and how do you guys cope with your daily activities? Especially in showers, exercises, any kind of life hacks of people like us?

I’m also trying to get onto the transplant’s waiting list and will be meeting my new lung team soon in a few weeks’ time to get the transplant conversation started. In just two years, my condition has deteriorated pretty fast and it’s worrying. Hope to hear from anyone!

Interested in more discussions like this? Go to the Lung Health Support Group.

bleo | @bleo | May 9, 2018
In reply to @lisalucier "Hello, @bleo -- I wanted to welcome you to Mayo Clinic Connect. I am sorry for..." + (show)
@lisalucier

Hello, @bleo -- I wanted to welcome you to Mayo Clinic Connect. I am sorry for the very challenging road you've been on with this Nonspecific Interstitial Pneumonia related to your autoimmune disorder.

I'd like to introduce you to @penlee, who has mentioned Nonspecific Interstitial Pneumonia, and also thought that @kturchin @rcfan9 @bergw2818 @llwortman @windwalker @rosemarya @oliver22 @cloe001 and @francko might have some thoughts for you on dealing with limited lung capacity, being on oxygen 24/7, breathlessness from coughing, lower limb numbness, and challenges with showering and exercising.

That is a big step that you will be meeting with your new lung team soon to get the transplant conversation started. Hoping all of that goes well, and would love to hear more as that progresses.

Wondering if you have found some "life hacks," as well, @bleo, through your experiences with this condition, that you might share?

Jump to this post

Hi @rosemarya Thanks for your best wishes! I will keep you all posted once I have my first meeting with my new lung team. Keeping my fingers crossed!

Been watching videos of life after transplant on youtube and they're really inspiring. And I'm so moved by them. So determined to fight and their positive attitude made them overcame the challenges.

REPLY
bleo | @bleo | May 9, 2018

Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or if you have personally experienced this before - involuntary inhalation like short gasps for air, sometimes through my nose, sometimes through my mouth. it happens from time to time for me.. when i sleep or when i'm sitting at rest. i wonder why..

and also, jerky breathing when I walk.

and I could hear my own wheezing sounds during sleep and this only happens after a really tiring day or after I cough really hard.

any thoughts?

REPLY
4 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2018
In reply to @bleo "Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or..." + (show)
@bleo

Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or if you have personally experienced this before - involuntary inhalation like short gasps for air, sometimes through my nose, sometimes through my mouth. it happens from time to time for me.. when i sleep or when i'm sitting at rest. i wonder why..

and also, jerky breathing when I walk.

and I could hear my own wheezing sounds during sleep and this only happens after a really tiring day or after I cough really hard.

any thoughts?

Jump to this post

@bleo Wheezing is typical, not familiar with jerky breathing. As for the the involuntary inhale, I had never heard of that. I experience involuntary exhaling as I drift into sleep. It is the air that gets trapped in the lungs, usually it gets hung up in scar tissue and floppy airways. The funny part is, it escapes up my windpipe and through my vocals cords. It sounds like a harmonica! When it first started happening; it frightened me. It would startle me awake. Weird, huh?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2018
In reply to @penlee "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..." + (show)
@penlee

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

@bleo Are you on your oxygen when you walk to the bathroom?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2018
In reply to @penlee "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..." + (show)
@penlee

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

@bleo Lung function and oxygen sats are two different things. I am confused at to which of these numbers you stated are what. For example my lung function is 37%, but, my pulse oxometer tells me that my oxygen level is at 91% when I walk, but will also drop to 87% and I am at 96% at sitting rest. So, are you saying that your lung function is at 40% and your oxygen level drops to 37% when you walk? Geeze that is low! No wonder you are struggling. What is your at rest oxygen level on and off oxygen?

REPLY
1 reply
bleo | @bleo | May 9, 2018
In reply to @penlee "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..." + (show)
@penlee

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

Yes you're right. Lung function at 40%. That 37% oxygen level happened when I was coughing really hard yesterday and catching my breath. Yes and I was on oxygen when I walked to the bathroom.

Usually at rest my oxygen level ranges from 92-97%, Without oxygen, around 88%. And when I start walking even slowly, it'll drop to about 76-82%.

REPLY
bleo | @bleo | May 14, 2018
In reply to @penlee "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..." + (show)
@penlee

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

@penlee Thanks so much for recommending the book Ultimate Pulmonary Wellness by Dr Noah Greenspan. I have done many many research and bought many books about our condition and this is by far the BEST ever! It explains everything in such detail and answered all of the questions that I have been having. The sections on recovery breathing and exercise truly helps! Dr Noah made the book available online now, bless him! https://www.pulmonarywellness.com/book/ @windwalker Strongly recommended.

REPLY
bleo | @bleo | May 14, 2018
In reply to @bleo "Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or..." + (show)
@bleo

Oh and.. forgot to ask you all @windwalker @penlee do you guys know of anyone or if you have personally experienced this before - involuntary inhalation like short gasps for air, sometimes through my nose, sometimes through my mouth. it happens from time to time for me.. when i sleep or when i'm sitting at rest. i wonder why..

and also, jerky breathing when I walk.

and I could hear my own wheezing sounds during sleep and this only happens after a really tiring day or after I cough really hard.

any thoughts?

Jump to this post

sounds similar! mine sounds musical too. my sister who sleeps with me wonder if i'm talking or singing in my sleep. yes and i could hear myself too! but lately it doesn't happen as often anymore.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2018
In reply to @penlee "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..." + (show)
@penlee

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

@bleo Thank you for sharing that. That gives me a good idea of the shape you are in.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2018
In reply to @penlee "Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here..." + (show)
@penlee

Hi Bleo, Your NSIP condition seems complicated. I admire your desire to try and improve. Here is where I am now. I have a similar unspecified pulmonary fibrosis probably autoimmune related. Recently one pulmonologist called it Unclassisied PF after no triggering cause has been found and I don’t fit neatly into any category. This has been frustrating but I try not to dwell on it which is hard. I am taking first 5mg now 2.5mg Prednisone and Cellcept (mycophenolate) 1,000mg/day for eight months. It seems to have stabilize my lung changes and I usually feel good, just not as much energy as in the past. Most days I try to exercise by walking with my dog, some breathing exercises and mild yoga and general fitness classes. Coughing and classes can be a problem so a good supply of cough drops help. doTerra (essential oils company) has some that especially help when it is smoky. Also, I use Breathe Easy tea by Traditional Medicine as someone else has mentioned. Very soothing to the throat, cuts the cough. PF seems a bit isolating which I sense in others who post here at Mayo Clinic Connect. When a friend invites me to walk with them I gently decline because I walk so slowly and can’t really talk. It sounds like you are trying to walk a treadmill and do breathing exercises. I feel exercise helps me. My lungs feel more open after exercise (does that make sense?) Keep it up as you can tolerate. Especially if you go for a lung transplant it will keep your muscles in better shape for your recovery. Some months ago another person on Connect recommended a book published in 2017: Ultimate Pulmonary Wellness by Dr Noah Greenspan. I found it very helpful! PF is a tough diagnosis. Thank goodness there are helps/hacks and many encouraging people! I am glad you joined in the discussions.

Jump to this post

@bleo, I had the exact same numbers for years. My numbers have improved greatly in oxygen sat rate. It gradually improved and now is at 96-98%. That is a miracle because I lived with it being at 90% for many years. My lungs have permanant damage and only function at 37%.

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