Steroids and Their Side Effects

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

Your doctor will slowly start reducing your dosage of steroids over several weeks or months when it appears that GVHD is under control. However, it is common for GVHD to flare up during the tapering process, and you may need to return to 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 take precautions to prevent an infection while on steroids. Staying away from crowded spaces or anyone who is sick is important. 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. These 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
  • 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 you can begin reducing the 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 and cataracts, 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 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
  • Easily distracted
  • Irritability
  • Feeling down, lacking energy and enthusiasm
  • Restlessness
  • Tearfulness
  • Memory problems

A small percentage of patients – approximately 6% - 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

Be sure to tell your healthcare team if you are experiencing any of these side effects. They may be able to recommend treatments or strategies to help you manage the side effects until you no longer need the steroids. 

Also, be sure to communicate with your family about how you are feeling – don’t assume that they realize that your mood and behavior are medication-related. You need and deserve the support of everyone around you during this process.