Unfortunately, there aren't good substitutes for prednisone, and your Grandmother seems to be on all the standard meds, with some of them doubled for good measure. With the Performist she's getting a long acting beta agonist (LABA), the Spiriva is a long acting muscarinic agent (LABA) and the budesonide is an inhaled steroid (ICS), with the duoneb, she's getting a short ABA (SABA) as well as albuterol, the Asmanex is another ICS. The azithromycin daily is best practice to try to reduce the number of exacerbations. You've asked about Daliresp, but the azithromycin does the same thing without the gastric problem, so I agree with her doc, that's probably not a good alternative for her.

You could ask to up the azithromycin to see if that helps any in reducing the exacerbations. The point of that is to let the patient really recover between exacerbations and actually find out what it feels like to be a little healthier for awhile and I think your grandmother could definitely benefit from that. If you've been dealing with the same pulmonologist for a long time, you might ask for a second opinion and get an Infectious Disease Pulmonologist involved if you can. Getting a fresh pair of eyes might provide some insights.

As for all the other meds available, they are essentially two-fers or in one case a three-fer: they are combinations of meds she's already getting in single form. That's not to say she might do better on some of the combinations, but you'd have to be ready to experiment a bit in case something doesn't work well.

As for her O2 levels, it simply means that she still have good enough gas exchange and she's doing the CO2 to O2 exchange well enough to keep her oxygenated. That's good, and as long as that's good, she's probably not retaining CO2 consistently. If she were, you'd have been told and she'd have a bi-pap or a trilogy machine to use on top of everything else.

Try a second opinion. I'd be in favor of getting her off all the single dose meds and trying some of the combinations that are available. If you can get her to the point where she's actually well enough to feel better, then get her involved in a Pulmonary Rehab program where she'll learn how to exercise and she'll learn about COPD and how to control and manage it on her own.

Dear Courtney, I had a car accident which crushed my air sacs.It only took me 3 years to reach end stage. I now have an in-home ventolator called a Trelogy & I am so much better.When the attack is coming, I grab that forceful machine & it does the work of my lungs forcing co2 out & oxygen in.No hospital for 3 months for the 1st time in 15 months.It is working for me.Ask until you get it & God Bless You!

I hate to give advise but for me I have been on 10mg of prednisone for while. I have had Dr's try and get me off but then I get sick. I suppose there are side effects but pneumonia seems to be a side effect of not taking it. I would be interested if any else takes prednisone on a regular basis.

As far as being on O2 remember that emphysema is fold ... it is not getting enough oxygen and also not exhaling enough carbon monoxide. Most Dr will give you a walking test to see if your levels go down below 90 but the carbon monoxide can only be checked with a blood test.

Hope that helps a little

Her problem in my opinion is steroid withdrawl! I'm currently going thru the same thing and it took me forever to figure it out. The doctors never did! Check out this website and read the patient comments.. theres also a section on steroid withdrawl you should find informative. The ASMANEX is just more steroids and only adds to the problems. Keep in mind, its withdrawl from the steroids causing the issues. This is why your seeing the exacerbations after shes been off a short time. Same thing happens to me!! I've only been on 50 mg a day for about 3 months or so and a 10 mg taper sent me into congestive heart failure.

https://www.medicinenet.com/steroid_withdrawal/...

I wish her good luck and hope she can get off them entirely. I'm currently tapering down at only 1mg every 2 weeks and still having terrible problems.

Courtney,I failed to ask the age of your grandmother.The prednisone caused 125 lb. weight gain. & if a smoker how long since she quit?Also, what does she weigh?I am 66 years old,smoked off & on near 25 years,stopped 5 years ago.Without oxygen, I go to 50 stats.I am aline because of a in-home ventilator called Trelegy with Eliipta inhalerThe machine does take over for my lungs & it expels the Carbon Dixoide allowing oxygen in.You die without these 2 essential processes.I can die with them, but my odds are much higher to live.Stem cell research hasn't developed enough for our lungs, but IT'S NOT FAR! HAVE FAITH