Steroids

Steroids, such as prednisone and methylprednisolone, are used extensively to treat both acute and chronic GVHD. You may need to take steroids for several months or longer to keep your GVHD under control.

When it looks like your GVHD is improving, your doctor will slowly start reducing the dosage of steroids over several weeks or months. However, it is common for GVHD to flare up during this tapering process. You may need to resume taking a higher dosage for a while, or slow down the tapering process.

Although steroids are an important tool for managing GVHD, they can also cause significant side effects.

Be Alert for Signs of an Infection

Because steroids weaken your immune system and can suppress a fever, you will have a higher risk of developing a serious infection. Be sure to tell your healthcare team immediately if you:

• have a fever over 100.4 degrees
• are experiencing chills 

It’s important to avoid anyone who is sick, or who has been near someone who is sick. Ask your transplant team for guidance on how to reduce your risk of infection. 

Click here for more information about infections and GVHD.

Physical Side Effects of Steroids

Steroids can cause side effects that temporarily alter your appearance, weaken your muscles and bones, and affect your organs' performance.

Side effects include:

• high blood sugar levels that can lead to diabetes
• increased appetite and weight gain
• fluid retention that causes puffiness or swelling in the arms, legs, and/or face
• muscle weakness, fatigue, or tremors that can affect strength and balance
• delayed wound healing 
• difficulty sleeping
• upset stomach or ulcers
• loss of appetite
• increased fat around the midsection, upper back, neck, or face
• high blood pressure

Long-term use of steroids can lead to additional problems, such as:

• weakened bones that can lead to osteoporosis or avascular necrosis
• thinning, fragile skin that may bruise easily 
• vision problems such as glaucoma or cataracts

Tell your healthcare team if you develop any of these side effects. Most are temporary and decrease once your doctor begins reducing your dosage of steroids.

You may start experiencing side effects the first week you begin taking steroids or several weeks later. The side effects can persist for up to two months after you stop taking steroids. Some, such as osteoporosis, are permanent.

Do not stop taking steroids unless your doctor tells you to do so.  Stopping steroids abruptly can cause serious medical problems.

If you have been on steroids for several weeks, your body may become dependent on them and stop making your own steroid-like proteins. This is called “adrenal insufficiency.” Stopping steroids abruptly or lowering the dose too quickly can also cause your blood pressure to fall to a very low level, causing lightheadedness, diarrhea, and nausea. 

If you get very sick, be sure your healthcare providers know that you are taking steroids.

How Steroids Affect the Brain

Steroids can impact your mood as well as how you process information. It is common to feel stronger emotions than usual while on steroids, such as extreme anxiety or extreme sadness.

Approximately one-third of patients on steroids experience mild to moderate psychiatric problems such as:

• anxiety
• irritation
• mood swings
• agitation
• being easily distracted
• irritability
• feeling down, lacking energy and enthusiasm
• restlessness
• tearfulness
• memory problems

A small percentage of patients experience more severe problems such as:

• seeing or hearing things that are not there 
• having beliefs that are strange or magical
• delirium
• mania
• suicidal thoughts

Tell your healthcare team if you are experiencing any of these side effects. They can recommend treatments or strategies to help you manage them until you no longer need steroids. 

Tips to Help Minimize Steroid Side Effects

• Keep healthy snacks readily available for when your appetite surges. Avoid filling the pantry with salty and fatty snack foods that can cause weight gain.
• Eat a diet high in calcium and try to stick to foods with a low glycemic index. This can help control your blood sugar. 
• Ask your doctor whether you should be taking calcium and vitamin D supplements, or other medications to lower your risk of developing osteoporosis. 
• Take your steroids with food to minimize heartburn and
  nausea. If you experience any heartburn or nausea, let your
  healthcare team know. Antacids or other prescription medications can be helpful.   
• Stay well hydrated - drink at least 64 ounces of fluid a day.
• Take your steroids in the morning, rather than in the evening, so they don't interfere with your sleep.
• Practice healthy sleep hygiene habits  and try meditation in the evening to reduce stress and restlessness and  improve the quality of your sleep.  Watch a video about improving your sleep.
• Try meditation in the evening to reduce stress and restlessness and improve the quality of your sleep.
• Exercise daily, even if it is a just a short walk. This will help keep your muscles strong. 
• Ask your transplant team whether physical therapy can help you manage the side effects of steroids.
• Avoid caffeine, alcohol, and spicy foods that may cause hot flushing.
• Learn how to monitor your blood pressure and blood sugar at home. Record the results and report them to your healthcare team. 
• Share the potential side effects with your family and friends to help them understand that unusual behavior or outbursts may be due to the steroids.

Next Page: Other Drugs Used to Treat GVHD