Severe COPD and Interstitial Lung Disease

Posted by aldrichgirl @aldrichgirl, Jul 1, 2018

I was diagnosed several years ago with COPD after 40+ years of smoking. In the subsequent years we have learned I have 4 or 5 interstitial diseases including Interstitial Lung Disease. The two have been about equal but recent testing showed the interstitial is much worse than the COPD. I would love to know if anyone else has this problem and what the effects of the interstitial side are. I have been on O2 for years but just recently I have gotten so bad that I can barely pull 91% while sitting and on my home concentrator. I had always been able to pull 90% without the oxygen. That’s how much worse it’s gotten and walking is almost impossible. Everytime I get up & walk around I drop down to 80%, even while on oxygen. It’s getting harder & harder just to breathe. Would love to hear any comments or advice.

@colleenyoung

Hi @tcont2000, and welcome to Connect.
You'll notice that I moved your message to this existing discussion about COPD called "Severe COPD and Interstitial Lung Disease" where you can meet members like @aldrichgirl @waterboy @blueheeler309 @windwalker and others.

COPD discussions can be found in the Lung Health group (https://connect.mayoclinic.org/group/lung-conditions/). I encourage you to follow the group.
Here are few other discussions, you may be interested in:
– COPD/ Emphysema https://connect.mayoclinic.org/discussion/copd-emphysema/
– copd end stage https://connect.mayoclinic.org/discussion/copd-end-stage/

TCont2000, are you living with COPD or caring for someone with COPD? We look forward to getting to know you.

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Hello. Been living with COPD for about 4 years. Am on prednisone, and inhalers and o2 24/7. Why do I feel so awful when I wake up? Really hate mornings!!

Not sure how you are taking your prednisone, but I would break it into a majority in the morning and then the rest at night. Like 3/4 in the morning and 1/4 at night. Your cortisol should build at night, but maybe you just do not have enough. It is a juggling act. Get a good night sleep and regulate your sleeping patterns as best that you can. IMHO… Best of luck to you! Sean L. Roop (Private message – with any questions).

@seanlroop

Not sure how you are taking your prednisone, but I would break it into a majority in the morning and then the rest at night. Like 3/4 in the morning and 1/4 at night. Your cortisol should build at night, but maybe you just do not have enough. It is a juggling act. Get a good night sleep and regulate your sleeping patterns as best that you can. IMHO… Best of luck to you! Sean L. Roop (Private message – with any questions).

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I was hospitalized 11 days in Arkansas at a St. Vincent's. Unknown lung issue? Because I had cardiac stents placed and am taking plavix, the pulmonologist was unable to take tissue, however did a bronchoscopy wash??? Specimens were sent to Mayo for pathology. We have a patient portal that says new test results are in but won't show me the results? my post-discharge follow-up with pulmonology was supposed to be on October 22nd and on Friday they called to move me up I go tomorrow to get the results funny thing is here in Arkansas you see the nurse practitioner before you see the specialist so I don't know if I'm getting delivered good news or bad news or if they're going to tell me they still don't know

@shawnb1

I was hospitalized 11 days in Arkansas at a St. Vincent's. Unknown lung issue? Because I had cardiac stents placed and am taking plavix, the pulmonologist was unable to take tissue, however did a bronchoscopy wash??? Specimens were sent to Mayo for pathology. We have a patient portal that says new test results are in but won't show me the results? my post-discharge follow-up with pulmonology was supposed to be on October 22nd and on Friday they called to move me up I go tomorrow to get the results funny thing is here in Arkansas you see the nurse practitioner before you see the specialist so I don't know if I'm getting delivered good news or bad news or if they're going to tell me they still don't know

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I, too am on high dosing of Prednisone. Horrible side effects, but the only thing I started responding to

@shawnb1

I was hospitalized 11 days in Arkansas at a St. Vincent's. Unknown lung issue? Because I had cardiac stents placed and am taking plavix, the pulmonologist was unable to take tissue, however did a bronchoscopy wash??? Specimens were sent to Mayo for pathology. We have a patient portal that says new test results are in but won't show me the results? my post-discharge follow-up with pulmonology was supposed to be on October 22nd and on Friday they called to move me up I go tomorrow to get the results funny thing is here in Arkansas you see the nurse practitioner before you see the specialist so I don't know if I'm getting delivered good news or bad news or if they're going to tell me they still don't know

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Hi @shawnb1, welcome to Connect. A lot of times the test results take awhile to post in the patient portal. You could use the portal to send a message to your doctor/care team. They could have just moved up your appointment due to a cancellation.

If possible can you let share what you find out tomorrow?

John

@johnbishop

Hi @shawnb1, welcome to Connect. A lot of times the test results take awhile to post in the patient portal. You could use the portal to send a message to your doctor/care team. They could have just moved up your appointment due to a cancellation.

If possible can you let share what you find out tomorrow?

John

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Yes, I'll post findings,if any. I was curious to know if maybe I have an acct with Mayo since my samples went to pathology there, if Mayo has a patient portal? Just a thought

@shawnb1

Yes, I'll post findings,if any. I was curious to know if maybe I have an acct with Mayo since my samples went to pathology there, if Mayo has a patient portal? Just a thought

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If you have a Mayo Clinic Patient number you should be able to log into the patient portal. You may have to register first if you have never logged in.

Patient Online Services
https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline

@shawnb1

I, too am on high dosing of Prednisone. Horrible side effects, but the only thing I started responding to

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There is definitely a trade off. I gained 25 # in 4 weeks from 180 to 205, but I am SLOWLY DECREASING my dosage to manage water weight and now really watching my diet. Actually you should see a crease in your overall cholesterol especially your LDL. Cortisol is a wonderful thing but you need to really watch gaining too much weight because it’s difficult on your heart and other organs. I’m wearing that the hard way but it took a very high dose to get the response that I needed initially because I had no Cortisol at baseline or undetectable at least. Again good luck to you! Sean

@shawnb1

I, too am on high dosing of Prednisone. Horrible side effects, but the only thing I started responding to

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@shawnb1 – from Tinkerbell – I agree with the horrible side effects of Prednisone. I have GCA and was started on 60 mg. A year and a half ago. Tomorrow I will be taking my last 1/2 mg. Pill. Now the problem will be do I have to go back on if I have any problems with new symptoms. I had all of the side effects – weight gain, swollen face, sleepless nights, swollen abdomen, swelling above the waist, swelling on the sides of my neck and I am sure I missed a few.

I was on 40mg over 10 years ago for UC. In the interim I developed severe stage 3 COPD. Knowing prednisone isn't really good for anyone especially long term I weaned myself down to 15mg daily about 6 years ago. It's about as far as I could go without impacting my breathing. Guess my lungs got use to it and like it. I have had uncontrolled diabetes for over 6 years (i'm sure prednisone related) went from 185 -220, faces is puffer than normal, swollen feet, swollen abdomen (prednisone , diabetes, & little to no exercise) for the most part I sleep good. I think I'm going to take another shot at getting of prednisone at least for a while to see if I can lose weight and get my sugar down.8 years ago I would never take an aspirin unless I absolutely needed it and now take 10 pills in the morning and 7 at night, Plus 3 inhalers. I'd like to get back to my fighting weight if only for a few months 🙂 Taking a lower dose does help my breathing and when I experience a flare up we do a micro boost (40 for 3 days , 30 for 3days , 20 for 3 days then back to normal) in addition and antibiotic. So far it's kept me out of the hospital.

@bb729

I was on 40mg over 10 years ago for UC. In the interim I developed severe stage 3 COPD. Knowing prednisone isn't really good for anyone especially long term I weaned myself down to 15mg daily about 6 years ago. It's about as far as I could go without impacting my breathing. Guess my lungs got use to it and like it. I have had uncontrolled diabetes for over 6 years (i'm sure prednisone related) went from 185 -220, faces is puffer than normal, swollen feet, swollen abdomen (prednisone , diabetes, & little to no exercise) for the most part I sleep good. I think I'm going to take another shot at getting of prednisone at least for a while to see if I can lose weight and get my sugar down.8 years ago I would never take an aspirin unless I absolutely needed it and now take 10 pills in the morning and 7 at night, Plus 3 inhalers. I'd like to get back to my fighting weight if only for a few months 🙂 Taking a lower dose does help my breathing and when I experience a flare up we do a micro boost (40 for 3 days , 30 for 3days , 20 for 3 days then back to normal) in addition and antibiotic. So far it's kept me out of the hospital.

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I'm on 40mg 3x daily. Yes, no history of diabetes in my family,yet sterroid.induced my sugars are high. I have opted not to do a sliding scale imsulin. I'm miserable,but I'm alive. I am a bit more congested and wheezy today. I also have oxygen therapy.if I need it. Took 2 weeks home for me to go to as needed. I'm just wanting a diagnosis?? I've been tested seems like everything, then the broncoscopy, they could only specimen fluids, that went to Mayo?

@tinkerbell

@shawnb1 – from Tinkerbell – I agree with the horrible side effects of Prednisone. I have GCA and was started on 60 mg. A year and a half ago. Tomorrow I will be taking my last 1/2 mg. Pill. Now the problem will be do I have to go back on if I have any problems with new symptoms. I had all of the side effects – weight gain, swollen face, sleepless nights, swollen abdomen, swelling above the waist, swelling on the sides of my neck and I am sure I missed a few.

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I told my primary care physician I'm not doing this steroid stuff. I left the hospital a size 10/12, I had been 3 weeks on the Paleo plan(75%), had lost 13#, at Discharge was 154#, last Thursday 174#, I'm 5'2. I already battle depression and feel like my meds don't even phase me. It's like I'm in a fog, memory is poor, I'm unsteady, I just don't feel right? Something is being missed here? I'm 49, I just don't get it?

@johnbishop

If you have a Mayo Clinic Patient number you should be able to log into the patient portal. You may have to register first if you have never logged in.

Patient Online Services
https://gpsnetx.mayoclinic.org/psi/content/staticpatient/showpage/patientonline

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Thank you so much. I guess when I go to my pulmonologist tomorrow I'll get copies from Mayo. They are open b-day til 5( mayo business) to help me create an acct. I really love this website. This hospital looks amazing! Wish Arkansas had it!!

@seanlroop

Not sure how you are taking your prednisone, but I would break it into a majority in the morning and then the rest at night. Like 3/4 in the morning and 1/4 at night. Your cortisol should build at night, but maybe you just do not have enough. It is a juggling act. Get a good night sleep and regulate your sleeping patterns as best that you can. IMHO… Best of luck to you! Sean L. Roop (Private message – with any questions).

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@seanlroop you may have noticed I removed your email from your post. I appreciate the generous offer to @tcont2000 to share your personal contact information to answer questions etc. However, I'd also like to underline the benefit of sharing here on the forum. It was because of the sharing here that @tcont2000 was able to find these conversations in the first place. By asking questions and getting answers here, you will both be creating a treasure trove of valuable information and first hand experience for those with COPD and interstitial lung disease. I encourage you to continue your exchange on Connect and thank you for being willing to do so.

@ethanmcconkey

@seanlroop you may have noticed I removed your email from your post. I appreciate the generous offer to @tcont2000 to share your personal contact information to answer questions etc. However, I'd also like to underline the benefit of sharing here on the forum. It was because of the sharing here that @tcont2000 was able to find these conversations in the first place. By asking questions and getting answers here, you will both be creating a treasure trove of valuable information and first hand experience for those with COPD and interstitial lung disease. I encourage you to continue your exchange on Connect and thank you for being willing to do so.

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I did not mean to do anything outside the limitations set forth in this blog I’m just not on it very much. Just trying to share my experiences and hopefully help someone in the future. Thank you for your help in guidance and I will stick to the blog and not put in my personal information. Thanks Sean

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