COPD Medication Trial and Error

Living with COPD can mean facing frustrating phases of medication trial and error.

When you get a diagnosis of chronic obstructive pulmonary disease (COPD), you’re told there is no cure. Of course, there are medications that can make it better. They may even slow the progression.

Unlike with most other chronic conditions, you’ll quickly find the COPD medication list is very big with no clear winner.

This is why I am hesitant to answer when I’m asked what medicine I’m on for COPD. I don’t want anyone to think I have the magic answer — because there isn’t one. I tried four combinations before I found the one that works for me.

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Getting started with COPD

The pulmonologist who diagnosed my emphysema was not very interested in treating me. He gave me a Symbicort inhaler and told me to make sure I never smoked again.

Symbicort is just one inhaler from a long list of COPD medications, but it rarely works alone.

That doctor actually left the practice soon after that, and I found my current pulmonologist. He’s the total opposite. He always listens and wants to make me feel as good as possible. We discussed my treatment plan and he added Advair to the mix.

Symbicort and Advair contain different medications, giving me a combination of four different prescriptions in two inhalers. Unfortunately, they were making me dizzy with all the inhales. I wasn’t even sure it was helping my breathing.

My doctor listened to me, and that’s when we decided to ditch the two inhalers and give Trelegy a try. I only used Trelegy once a day, and it has a combination of three medications in it.

Quality of life

You will hear me talk and see me write a lot about quality of life. It can refer to many aspects of an illness and be unique to you. It’s about making choices that are best for you.

Trelegy is a popular inhaler for COPD. Many people have no problem with it. The medication worked well for my COPD, but it caused horrible mouth sores for me.

My breathing was better than it had been since I was diagnosed. But my mouth was in pain, and I could barely eat or talk. The roof of my mouth was eroded, and my throat was heading in that direction.

It was a tough decision, but I decided that it didn’t matter how well the medication was working. It was ruining my quality of life. I told my pulmonologist it was time to try another. I had to go a month without an inhaler, using prednisone and a nebulizer to let my mouth heal before doing anything else.

Getting the meds

Breztri was new when I first tried it. My pulmonologist had gotten me a sample.

It was working great, but I found out the price was $600 a month with my insurance, and I just couldn’t do it.

There are options for getting medications you can’t afford. GoodRx or Optum Perks are options for getting prices down. In my case, it didn’t get it down enough to make it affordable. While $375 is much better than $600, it was still not within my budget.

I worked with the pharmaceutical company to get it for a small copay of just $25. Most companies will work with you to make their drugs more affordable. Unfortunately, they can’t do this under current laws if you are on government insurance such as Medicare or Medicaid.

I went on Medicare and ran into the problem of paying for it again. My doctor got the insurance company to give me an exception and pay for the drug as if it were a tier one, so I again had a low copay. Insurance will often reject paying for an expensive drug at first, but if your doctor can show that you have tried other cheaper ones that didn’t work, they’ll often allow it.

You have nothing to lose by appealing the decision.

Where I am now

I’ve been on Breztri for about 5 years now. It helps a lot. I am also on a biologic, Rituxan, for autoimmune disease. It also helps my COPD because it reduces my body’s inflammation. 

I do still have exacerbations where I’m suddenly having more trouble breathing and getting tired very easily. I have a nebulizer with albuterol vials and extra prednisone I can take for that.

I know COPD will never go away, and I am lucky to have a pulmonologist who is always available and listens. I believe that is so important for everyone.

The bottom line

After reading this, I’m sure you now understand why it’s not so easy to recommend a COPD treatment. I ended up on a combination drug in addition to oral prednisone.

It’s all trial and error to find what is right for you, but there’s a lot of hope in knowing there are so many choices. It’s not unusual that finding the right one may take a while. In a few years, you may have to begin the process again, as medication needs can change as your lungs do.

Finally, it’s important to keep your pulmonologist informed if you react to any drug. Call 911 or a local emergency number if you are having difficulty breathing.