How I Deal With Steroid Side Effects

My experience with steroids has had its ups and downs.

As someone who grew up with severe allergies, I sometimes had to take high dose steroids for short stints. I had one episode when I was stung by a bee that had me in the hospital on intravenous steroids for a week and high doses for the following month.

Other than that incident, I was never on the steroids long term. But the last few years have been different. Not only have I had to face high doses, but my pulmonologist has told me I will probably always be on a maintenance dose of steroids because of my COPD.

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The drug I love to hate

I call prednisone (the most commonly used oral steroid) the drug I love to hate. When I’m on it, I feel relief for not only my breathing but also my autoimmune and arthritis conditions. Everything feels better. On the other hand, I have a long list of side effects and worry about dangerous withdrawal symptoms.

I know all too well what prednisone withdrawal can do. My grandmother was on a high dose for many years for rheumatoid arthritis. At that time, there were no other options for the disease. One day, she went to see her doctor, and he had read in a medical journal that they were discovering more serious side effects with the drug. He told her to stop taking it.

This was in the early 1970s, and they didn’t yet have many studies about the problems of withdrawal. Not only does it cause headaches, shaking, and nausea, but my grandmother had been on the medication so long that she had a stroke when she stopped cold turkey. She did not recover.

How I react to steroids

I don’t know how I would have gotten through the last few years without the prednisone. Between my lung issues and my dermatomyositis, I was on 60 milligrams (mg) daily for nearly a year. It helped me get out of bed, deal with the painful rashes and eye swelling, and breathe well enough to move around the house with a walker.

There didn’t seem to be a way out until I found other treatments to help my conditions. At the same time, I developed Cushing syndrome, which increases levels of the hormone cortisol. Cushing syndrome can be caused by long-term prednisone use. I had a “hump” in my upper back, a moon-shaped face, dizzy spells, and bruising everywhere. I also found myself with sudden depression to the point that I was crying all the time.

It was a horrible time, especially since it was also during the height of the COVID-19 pandemic, and I was almost always alone. But I don’t know whether I would have gone out in public anyway. My hands and legs were covered in bruises. I don’t think I’ve ever felt so down, uncomfortable, and unattractive.

Other possible side effects

A lot of the side effects of Cushing syndrome can happen separately from the prednisone. For example, the hump on my back is more of a symptom of Cushing syndrome, but there are other symptoms to look out for.

The most common symptom is weight gain from increased appetite and fluid retention. Nausea is also very common. In my case, the nausea was so bad that I lost a huge amount of weight, most of which I did not need to lose. I worked with a nutritionist to make sure I didn’t drop more pounds. I’ve been lucky that the steroids haven’t affected my bones, as they can for some people.

I also experienced one of the other problems with prednisone: increased blood sugar. Many people have developed diabetes while taking steroids, though it can improve once you’ve been off the drug for a while. I developed hypoglycemia, which means my blood sugar dipped dangerously low.

My blood sugar dropped as low as 24 mg per deciliter (mg/dL) some days, and I needed to wear a glucose monitor on my arm to notify me when my blood sugar dipped below 70 mg/dL. I went back to the nutritionist to figure out things to eat to manage my hypoglycemia.

Tips for dealing with steroids

I’ve learned a lot in all my time taking prednisone. Here are some tips to manage the ups and downs of steroid treatment:

• Stay on a low dose: My doctor says 5–10 mg is a safe dose for the maintenance of lung disease. I’ve been on 8 mg for the last 2 months and hope to stay there. If you’re taking a small dose, you can add some more when you have an exacerbation and not be on a giant amount. That number will be different for everyone. Discuss this with your pulmonologist.
• Stay consistent: Take steroids at the time prescribed by your doctor. Medication should be taken at the same time each day to get the most benefit.
• Never stop cold turkey: This is true no matter what dose you’re prescribed. If you get a bottle of prednisone pills, ask your doctor for a dosage plan. Find out whether you’re supposed to stay on a particular dose or decrease the dose slowly. The slower you go, the fewer withdrawal symptoms you’ll have.
• Take steroids with food: Try to take your pills with food to avoid nausea.
• Look for bruising: Taking prednisone might increase your risk of bruising or bleeding.
• Ask for help: Don’t hesitate to ask for help from a therapist if you’re feeling anxious or depressed.

The takeaway: Are steroids worth it?

I can understand if, by this point, you never want to go near this drug. But do you remember how I started this story? Steroids helped me breathe and made me feel a lot better in many ways. High doses of steroids can produce the contradiction of making you feel terrible and wonderful at the same time.

When it comes to COPD, this is certainly an important addition. Some of you will not need to take high doses of prednisone for a long time. It can get us through exacerbations without trips to the emergency room. It can reduce inflammation enough to keep us off oxygen a bit longer. It can also help us walk a little bit farther.

It doesn’t take much to get our lungs inflamed. Steroids are the quickest and most specific way to reduce that inflammation. A bonus is that nothing makes my back pain feel better like steroids do. And it’s worth noting that prednisone is available as a generic that’s very affordable at the pharmacy. You can discuss the risks and benefits with your doctor.