Severe COPD and Interstitial Lung Disease

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.

@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.

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

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 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.

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

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 Hello Shawn. Some of the lab results from the bronchioscope can take six to eight weeks to come back. That is because some organisms take that long to colonize in a petri dish if they are present. Hang in there!

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

I was seeing a transplant dr from Dallas & he told me I had to get my rotten teeth out and lose down to 160 lb. I got down to 180 but I just couldn't lose that last 20. I have had several other problems to deal with and been in & out of the hospital with Afib , too much C02 in my body, unexplained anemia so bad that I had to get 3 pints of blood. That's what all's been going on just since January. The transplant dr has not been back to see me. But I have recently gotten so bad that I can only pull 80% on my portable oxygen. Same thing if I get up and walk around the house with my concantrator . Very hard to exercise when you can't breathe. With this 100+ heat we're having I've basically become housebound because I can't breathe in this heat either. I'm seeing a new lung fellow next month. They are talking about starting on a med for the interstitial. We'll see. I appreciate your help and advice. Thank you. aldrichgirl