Asthma and Interstitial lung disease

Posted by jmb73 @jmb73, Mar 15 7:37am

I just had a pulmonary function test and it showed that my asthma was worse and my COPD is actually ILD. An ex-ray for bronchitis showed prominent markings for ILD. I am on a nebulizer to be used in the am and every 6 hours as necessary. With the Corona virus and having AFIB. PVC’s, Sjogrens, plus severe arthritis, a meningioma, fibromyalgia etc. I am afraid to go out. My lung doc said the ILD is caused by Sjogrens. Is there anyone on this group who has ILD and are you on any treatment. I am getting out of breath more often. I am 75. I will have a HRCT in May and see my lung doc the end of May to see how bad it is. I have looked on Google and it really scares me. I have to wait to May as they want my asthma under control before I have the HRCT. Thanks for your help.

Hi @jmb73 I can only imagine what you are feeling right now.

@noahs @suziropiequet @aldrichgirl @fighter @wendy4122 and @bb729 have all mentioned interstitial lung disease in the past and may be able to offer you some support while you wait to find out the severity and what your treatment options may be.

Has your doctor offered any treatment options thus far?

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My doctor said that he believes that he believes there is an error in the test. I have to repeat it.

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@ethanmcconkey

Hi @jmb73 I can only imagine what you are feeling right now.

@noahs @suziropiequet @aldrichgirl @fighter @wendy4122 and @bb729 have all mentioned interstitial lung disease in the past and may be able to offer you some support while you wait to find out the severity and what your treatment options may be.

Has your doctor offered any treatment options thus far?

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I only have seen the PA and she has increased my Breo 100 to Breo 200. She said the doctor wanted my asthma under control and to have the HRTC in May and then he would see me and discuss the disease. She said there was no treatment but there are some studies. With the coronavirus, I am staying home as much as possible. I am going to PT as I have gotten a stabbing pain in my head where the pin site (gamma surgery) infection was located. My PC ordered an MRI and she thinks is arthritis in my neck. But now I am afraid to go to PT and will cancel my appointments. The breathing issues have me really worried.

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Does anyone have some ideas about ILD- like how to help the symptoms? I always have pressure on my chest but I only use the nebulizer when my breathing gets really bad. I guess that is asthma but is the constant pressure ILD? Thanks Joan

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@jmb73

Does anyone have some ideas about ILD- like how to help the symptoms? I always have pressure on my chest but I only use the nebulizer when my breathing gets really bad. I guess that is asthma but is the constant pressure ILD? Thanks Joan

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@jmb73– Good morning. Not being able to control symptoms is very upsetting. Have you been to the doctor or spoken with him recently? Have you discussed this issue? How long have you felt these symptoms?
https://www.mayoclinic.org/departments-centers/interstitial-lung-disease-clinic/overview/ovc-20398498
https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/interstitial-lung-disease/

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Joan,
I use a nebulizer as needed, but don't wait until "the last minute" to ease the pressure.
I use PROAir & Flovent as well as needed. If you have ILD i am sure you have been told.
The pressure could possibly be do to other lung issues in the pneumonia/tuberculosis family. Your Pulmanolagist can help.

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@merpreb

@jmb73– Good morning. Not being able to control symptoms is very upsetting. Have you been to the doctor or spoken with him recently? Have you discussed this issue? How long have you felt these symptoms?
https://www.mayoclinic.org/departments-centers/interstitial-lung-disease-clinic/overview/ovc-20398498
https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/interstitial-lung-disease/

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I see my doc in May but he also works in the ICU so I hope he doesn't cancel. I did ask the PA and she said to use the nebulizer as needed. She said it's recommended use is every 6 hours but she wants me to use it if I have any chest congestion. I do have costochronditis and that causes pain and pressure in my chest. I have had these symptoms for 2 years and the doctors say it shouldn't be costochronditis as it has lasted too long. She said there is no treatment for ILD and to just treat my asthma. She said to not get stressed as it will make it worse. Let's see my son just lost his job and he has 2 kids, the corona virus attacks elderly and people who have asthma. He has asthma. My grandson lost his job and his father might lose his. No stress? Sorry to vent. I am sure every one is going through stuff like this. thanks for your help.

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@jmb73– YOu can vent all you want at Mayo Connect. Asthma is cruel and for some cases the only thing that will help are inhalers. Do you have any?

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Yes I have an inhaler but the PA said the Dr. would rather I use the nebulizer and only use the inhaler in an emergency. I have AFIB and am on nebulizer medicine that only raises my BP. I have high BP too but it isn't going too high. My inhaler isn't supposed to affect my heart either. I take BREO 100 too and once I use up the 100 I go on BREO 200. I need to lose weight as I am sure it would help but my second son just lost his job so I am still eating chocolate! My husband doesn't think I have bad asthma or ILD. I guess the Dr. just likes ordering nebulizers etc. I think he is confused as the last time I was in the hospital they kept saying my lungs sounded good. I went to the ER and was in trauma 1 and then spent 6 days in the hospital with breathing treatments every 4 hours. I also don't understand how my lungs sounded good! Do any of you know why they would say that?

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Hi jmb. My lungs too sound good but I have bronchiectasis, a chronic inflammation of the small bronchial tubes with an underlying MAC infection. There’s lots of air in my lungs, just can’t get it in or out. Perhaps you might want to have that checked out. Your pulmonologist can point you in the right direction.

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JMB, AFIB doesn't have a relationship (except for your overall health) to your lung problems. If you have ILD you would have been informed by now. You have "freedom of will." and you should commit to using it to change any trait that you have that you don't like! Not easy, ubt you can do it if you want to live a better life for you and yours. The inhaler IS for emergencies, and the nebulizer should loosen up and help clear your lung, and result in easier breathing. You should use it as often as needed. Good luck!

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@spudmato

JMB, AFIB doesn't have a relationship (except for your overall health) to your lung problems. If you have ILD you would have been informed by now. You have "freedom of will." and you should commit to using it to change any trait that you have that you don't like! Not easy, ubt you can do it if you want to live a better life for you and yours. The inhaler IS for emergencies, and the nebulizer should loosen up and help clear your lung, and result in easier breathing. You should use it as often as needed. Good luck!

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I do have ILD and it was caused by Sjogren's. I have one lobe of my lung that is gone/dried out from Sjogren's The nebulizer is helping and I use it at night as breathing sometimes becomes difficult around 7pm. Sometimes I don't feel like I need it and don't know if I should use it anyways. I have just started Breo 200 and hope it helps. I can't find information on symptoms of ILD vs asthma. Any ideas? Thanks and stay safe.

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@jmb73 It's always frightening to have a diagnosis like ILD – something most of us have probably never heard of. That's how I felt when I learned about having bronchiectasis plus pseudomonas and MAC. I was so happy to join Mayo Connect and find others with the same conditions and learn how to manage.
I just went and read the links Merry provided, and it was a lot like reading about bronchiectasis. It is serious, and may be progressive. With bronchiectasis, I choose to call it a life sentence, something to be lived with, not a death sentence.
I see that you are under the care of a doctor who has a plan for you. The Breo is your long-term anti-inflammatory. The nebulizer is your day-to-day controller to be used up to 4 nebs per day, even if you don't feel the need in the moment. The rescue inhaler is meant to be just that – when the other two regularly used together are not enough.
So given all that is going on in your life, what can you do to help yourself?
First, use your meds as prescribed. All of them, to help your breathing, your blood pressure and AFIB, arthritis, etc. If you are being seen by several different specialists, make sure one doc or a pharmacist looks at all of your meds, prescription and other, to make sure they are not "fighting" with one another.
Next, find something positive in each day – as simple as the sun coming in the window, a hot cup of tea, a little piece of good chocolate. Look here for ideas: https://connect.mayoclinic.org/discussion/visual-escapes-and-daily-inspirations-share-yours/
Finally, turn off the endless stream of bad news and pamper yourself in a small way to relax – a warm bath or shower, a walk around the yard to see what's coming up, music…
I'll be back soon to see how you're doing.
Sue

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@sueinmn

@jmb73 It's always frightening to have a diagnosis like ILD – something most of us have probably never heard of. That's how I felt when I learned about having bronchiectasis plus pseudomonas and MAC. I was so happy to join Mayo Connect and find others with the same conditions and learn how to manage.
I just went and read the links Merry provided, and it was a lot like reading about bronchiectasis. It is serious, and may be progressive. With bronchiectasis, I choose to call it a life sentence, something to be lived with, not a death sentence.
I see that you are under the care of a doctor who has a plan for you. The Breo is your long-term anti-inflammatory. The nebulizer is your day-to-day controller to be used up to 4 nebs per day, even if you don't feel the need in the moment. The rescue inhaler is meant to be just that – when the other two regularly used together are not enough.
So given all that is going on in your life, what can you do to help yourself?
First, use your meds as prescribed. All of them, to help your breathing, your blood pressure and AFIB, arthritis, etc. If you are being seen by several different specialists, make sure one doc or a pharmacist looks at all of your meds, prescription and other, to make sure they are not "fighting" with one another.
Next, find something positive in each day – as simple as the sun coming in the window, a hot cup of tea, a little piece of good chocolate. Look here for ideas: https://connect.mayoclinic.org/discussion/visual-escapes-and-daily-inspirations-share-yours/
Finally, turn off the endless stream of bad news and pamper yourself in a small way to relax – a warm bath or shower, a walk around the yard to see what's coming up, music…
I'll be back soon to see how you're doing.
Sue

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Hi Sue, Thank you for your support. I am taking the nebulizer every day and it's helping. My family gave me an apple watch for Christmas and my cardiologist said it will show if my heart rate goes too high and I get an AFIB episode. If that happens, I am to take an extra metopropol and it should lower the heart rate. I had a "phone" appointment with him and he reassured me as I was very concerned about going to the hospital if my rate goes too high. My kids have been super and my "unemployed" son and his family walk over to see my husband and I every morning . We stay in the garage and tell the kids (2 &3) we are sick so they play in the driveway and don't come near us. They don't stay long but it really helps. I realize that I am very lucky to have a great family and will practice my yoga breathing when I get depressed. My rheumatologist told me he can't help me as all of his medications will lower my already low immune system. So I have one less doctor to see. Unfortunately, I no longer can take NSAIDS and I am in constant pain. I am going to increase my CBD/THC as I know the pain is causing me to be depressed. It's frustrating but I will keep listing all the good things I have and try to get rid of the negativity. Thank you for your help. Stay safe.

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@jmb73

Hi Sue, Thank you for your support. I am taking the nebulizer every day and it's helping. My family gave me an apple watch for Christmas and my cardiologist said it will show if my heart rate goes too high and I get an AFIB episode. If that happens, I am to take an extra metopropol and it should lower the heart rate. I had a "phone" appointment with him and he reassured me as I was very concerned about going to the hospital if my rate goes too high. My kids have been super and my "unemployed" son and his family walk over to see my husband and I every morning . We stay in the garage and tell the kids (2 &3) we are sick so they play in the driveway and don't come near us. They don't stay long but it really helps. I realize that I am very lucky to have a great family and will practice my yoga breathing when I get depressed. My rheumatologist told me he can't help me as all of his medications will lower my already low immune system. So I have one less doctor to see. Unfortunately, I no longer can take NSAIDS and I am in constant pain. I am going to increase my CBD/THC as I know the pain is causing me to be depressed. It's frustrating but I will keep listing all the good things I have and try to get rid of the negativity. Thank you for your help. Stay safe.

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@jmb73 I am glad you are figuring out some coping mechanisms.
I too had to stop all NSAIDS some time ago and understand your struggle with pain – does your yoga breathing help with that at all? Also, there are some NSAID topical gels available by prescription that some rheumatologists use (Piroxicam and Diclofenac are 2) – maybe you can ask about those – they help me some on really bad days.
It might help to put a name to the awful feelings we are all dealing with right now – Ginger posted this on another discussion last night, maybe it will help you too. https://connect.mayoclinic.org/discussion/a-new-kind-of-grief-in-these-times/?pg=1#comment-384115
Hang in there, and check in with us from time to time – it is so unfortunate to get a scary diagnosis at the same time as our world is turned upside down by this virus.
Enjoy your family – my grands are near the same age – my daughter takes little video clips for us every day, of silly things or cute – we watch them over and over to feel better. Your son sounds very thoughtful – maybe he would do the same if you ask?
Stay calm, stay safe
Sue

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