Steroids and Their Side Effects
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 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 and cataracts, are permanent.
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.
Tips to Help Minimize Steroid Side Effects
- Be sure to keep healthy snacks readily available for when your appetite surges. Avoid filling the pantry with salty and fatty snack food. 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 to lower your risk of developing osteoporosis.
- Taking your steroid with food can help minimize heartburn and nausea. If you experience any heartburn or nausea – let your healthcare team know. Antacids or other prescription medications can be helpful.
- Be sure you stay well hydrated- drink at least 64 ounces of fluid a day.
- Taking your steroids in the morning, rather than in the evening, can help you sleep better. Steroids taken at bedtime can interrupt 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.
- 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.
