The Pitfalls of Prednisone: Surviving the Side Effects

Have you ever taken prednisone? If you have a chronic illness or autoimmune disease that is inflammatory in nature – as so many are – you probably have. And taking prednisone is like balancing precariously on a double-edged sword somewhere between gratitude and madness.

On the one hand, hooray! You’re feeling better! You can function! On the other hand, you’d like to eat everything in your kitchen, have a good cry, and then scream because you’re angry (although you don’t know exactly what you’re angry about).

Then again, maybe it’s the fact that you look like the Stay Puft Marshmallow Man.

If you have the appetite of a lumberjack and the wildly unpredictable mood swings of a teenage girl, this is a familiar cycle for you. And unfortunately you’ll have plenty of time to rinse and repeat because you will be up most of the night, desperate for sleep… or at least a good Hallmark movie.

Perhaps no medication incites as much of a mixed reaction as prednisone does. Why? Because we hate it. And because we love it.

If you’ve found yourself on the receiving end of a prednisone prescription, you know how dramatically – and how quickly – it can help a number of conditions.

Just how many conditions does prednisone treat, you ask? Well, according to WebMD, there are at least 89. But who’s counting (besides me)?

What is prednisone?

Prednisone belongs to a class of drugs known as corticosteroids. It works by reducing inflammation, swelling and other immune-related symptoms.

It’s prescribed as part of treatment for a number of different types of cancers, and for a lot of autoimmune-related conditions such as lupus, rheumatoid arthritis, Sjogren’s syndrome, myositis, psoriasis, Crohn’s disease and many others.

Prednisone mimics cortisol, a hormone that our bodies naturally produce. Our adrenal glands release cortisol in response to stress and inflammation. Of course, prednisone is much more potent – and it’s a synthetic drug.

I’m not a doctor. But I know our bodies are complex and a body in balance is a healthy body. Drugs, whether synthetic or organic can (and often do) upset the delicate balance of our body chemistry.

I suppose they have to, especially in situations where the battle is on and there’s no sneaking up on the opponent.

I’m reminded of the old expression about not going to a gun fight with a knife. Surviving the side of effects of prednisone requires that we make sure we’re aware of just how dangerous that gun can be.

The pitfalls of prednisone

As with any drug, even taking a short-term course of prednisone has risks and can produce side effects. Long-term use, however, carries more serious risks and side effects.

Like anything, there’s always a balance. Prednisone works rapidly. It reduces inflammation and swelling by dampening the immune response. It can and has (literally and metaphorically) saved lives. It’s been around for more than 60 years and it’s very inexpensive. It’s very effective, too.

But there’s still a price. The side effects can include:

• Risk of infection
• Weakening or damaging bones
• Anxiety
• Sleeplessness
• Increased hunger
• Weight gain
• Facial swelling
• Redistribution of body fat
• Excessive growth of body hair
• Muscle weakness and pain
• Acne
• Increased risk of stomach ulcers or other gastrointestinal problems
• Fluid retention/swelling
• Elevated blood sugar
• Elevated blood pressure
• Vision problems
• Hardening of the arteries

… and how you can manage them

I want to be clear that this isn’t medical advice – this is based on what I’ve learned and my own experience with surviving the side effects of prednisone and trying to avoid the long-term damaging effects.

1.First things first: follow your doctor’s orders

The dosage prescribed by your doctor is specific to you and your condition. Your doctor will adjust the dosage based on your response to the drug. Although typically prednisone is very effective, it is not a drug designed for long-term, regular use at high dosages.

In my experience, for longer courses of prednisone, the dosage is gradually tapered down based on the patient’s satisfactory response to the drug. As the patient’s condition improves, the dosage is reduced until the patient can be completely weaned off of the drug, or can remain at low enough dose to maintain a good response.

Remember when the doctor would prescribe a course of antibiotics and you’d decide to stop taking them when you felt better? YOU CANNOT DO THAT WITH PREDNISONE.

Take your dosage exactly as prescribed and keep your doctor apprised of any side effects. It may be helpful to take prednisone with food to avoid stomach upset.

2. Pay attention to your diet

Maybe “diet” isn’t even the right word. If you’ve ever taken prednisone at high doses, you know what I mean. The increased appetite is for real.

I’m a pretty disciplined person but my will power was no match for prednisone. When I was first diagnosed with myositis, I was prescribed the maximum dose of prednisone appropriate for my weight.

I wanted to eat EVERYTHING. As soon as dinner was over – and while my family was still doing dishes – I’d be snacking on peanut butter and crackers. When I’d go to bed I’d lay there and think about what I was going to have for breakfast.

But I was still losing weight. I learned that for the first few weeks, prednisone causes a breakdown of fat cells. But over time, it has the opposite effect, where fat cells become enlarged.

It’s important to manage what you eat not only to avoid weight gain, but to reduce the bloating, fluid retention and elevated blood sugar often caused by prednisone.

Some research indicates that prednisone can lower potassium levels, and because prednisone can weaken the bones, it’s important to have healthy, calcium-rich foods.

Focus on lower calorie, nutrient dense foods.

Reduce your intake of:

• salt
• added sugar
• processed foods

Focus instead on:

• fresh fruits
• fresh or frozen vegetables
• leafy greens
• broccoli
• sweet potatoes
• yogurt
• whole grains
• beans and lentils
• lean meat, poultry and seafood
• low fat dairy products
• high potassium foods such as bananas, spinach, yogurt, dried plums

I’m not going to pretend that I successfully avoided the pumpkin pie at Thanksgiving. Or the delicious red velvet cake that my sister made. It took me a while to make some food swaps. Need some ideas? Here you go (in no particular order):

• Natural peanut butter or almond butter with whole grain crackers
• Hummus with fresh vegetables for dipping
• Homemade granola (you can control the sweetness and use a natural sweetener like honey or pure maple syrup)
• Yogurt (plain) with fresh fruit
• Low fat cheeses (mozzarella, Swiss, provolone)
• Avocadoes (I lost track of how many I ate)
• Sardines (don’t judge me)
• Walnuts or almonds
• A dozen buffalo wings with blue cheese dressing and a side of fries

Eat three meals a day and make sure you stay hydrated. You may want to reduce your caffeine intake since prednisone can cause anxiety and sleeplessness.

3. Ask your doctor if you need supplements or additional tests or medications

Although your doctor should alert you to any issue with your blood work, keep an eye on your sodium, potassium and glucose levels. You can ask if a basic nutrition panel would be helpful to ensure that you don’t have any deficiencies that need to be addressed.

If you’re female, especially if you are over the age of 50, your doctor may want you to have a bone density scan to assess whether or not you have bone loss, and if it should be treated with medication.

Since prednisone can cause stomach upset or ulcers, many doctors prescribe medication to help prevent this while you are taking prednisone.

Because prednisone increases blood pressure, it’s also important to monitor your blood pressure between office visits.

4. Take care of your body

Stay active to the degree possible. If you aren’t able to take walks, gentle stretching and light activity around the house is helpful.

Because prednisone lowers your immune system, it’s important to manage your risk of infection. Talk to your doctor about precautions you should take and if or when you should have vaccinations.

Try to keep a regular sleep routine. Ask your doctor if you can take your prednisone in the morning so that you can fall asleep easier in the evening. Need some tips to fall asleep faster? These may help.

5. Be patient – and be kind to yourself

Really. Because for all of the positive effects that prednisone can have on treating inflammation, it’s obviously a dangerous drug – and a drug that’s difficult to cope with.

I knew that it was helping me – I could feel it. I was in the hospital barely able to function when I was diagnosed with myositis. The other drugs that I was given were drugs that can take months to produce noticeable progress. Prednisone acts more quickly – and I was grateful for that.

But I was struggling emotionally, too. I had a disease that robbed me of my ability to do the most basic of tasks. And unfortunately the remedy robbed me too – of my ability to manage my own emotions. It tested my discipline to be rational about anything – including food.

And it destroyed my self-esteem. In spite of consuming so much food, I was still losing weight and was 20 pounds south of where I needed to be.

I couldn’t sleep in spite of the overwhelming fatigue that ensnared me.

I remember catching a glimpse of my shadow one evening – the silhouette of my body seemed so broken.

It was early into my diagnosis and my shoulder and neck muscles had atrophied and weakened due to the myositis. I couldn’t stand up straight or easily hold my head up. And in spite of how thin I was, my stomach was bloated. That shadow. Surely that’s not mine, I hoped.

Seeing myself in the mirror was hard, too. My face was round and puffy. I had fine hairs growing around my mouth. Was this really me? I didn’t look like me. I was too tired and weak to try to put on makeup to disguise the face that I didn’t want looking back at me in the mirror. Why bother? Who was I trying to fool?

I wish that I could tell you that I found an easy way to cope with the emotional impact of taking prednisone.

It’s ironic how the drug used to treat the disease that stole my ability to function was itself a thief: it was stealing my self-discipline and self-confidence.

The only advice I can give you is to know that this – like most everything – is temporary. It will get better.

Years ago, I read The 7 Habits of Highly Effective People, a business-oriented self-help book by author Steven Covey. One of Covey’s habits seems particularly fitting here” “Begin with the End in Mind”. It reminded me that I needed to stay firmly focused on my destination: For me, that destination was to find healing, and I’d need to be both determined and patient in equal measures if I wanted to get there.