Steroids and Other Drugs Used to Treat Graft-versus-Host Disease

Drugs and other therapies used to treat patients with graft-versus-host disease can cause many side effects.

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

Stay 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

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.

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 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

Be sure to tell your healthcare team if you are experiencing any of these side effects. They can recommend treatments or strategies to help you manage the side effects until you no longer need the 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.
Exercise daily, even if it is 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

Other Drugs Used to Treat GVHD

Below is a list of side effects that have been reported for each drug or therapy in ten percent or more of patients. Other less common side effects have also been reported. Consult your doctor or pharmacist for details.

New drugs and therapies are constantly being developed to prevent or treat GVHD. If a drug you are taking is not on this list, consult your doctor or pharmacist for a list of potential side effects.

Herbs, Supplements, Botanicals, and Vitamins

Be careful about using herbs, supplements, botanicals, and mega-doses of vitamins while taking medications for GVHD. Some can reduce the effectiveness of your GVHD medication or cause serious side effects.

For example:

turmeric and curcumin supplements can change how your body processes tacrolimus; when they are applied to the skin, they can cause sun sensitivity
and/or a rash
garlic supplements can decrease the effectiveness of cyclosporine and increase your risk for bleeding (cooking with garlic is fine)
omega-3 supplements can interfere with the effectiveness of steroids used to treat GVHD and increase the risk of bleeding
milk thistle can interfere with how your liver processes sirolimus and some antifungal drugs
St. John’s wort can interfere with the effectiveness of cyclosporine and tacrolimus, as well as some blood pressure medications

Check with your doctor before starting or continuing to use any non-prescription medicine, herb or other supplement.

Drugs Used to Treat GVHD and Their Side Effects

Drugs are listed in alphbetical order below. Click on the first letter of the drug's name to view all drugs beginning with that letter. The letters in gray do not have drugs that begin with that letter in the directory.

| A| B | C | D | E | F | G | H | I | J | K | L | M |

| N | O | P | Q | R | S | T | U | V | W | X | Y | Z |

Drugs and Therapies Used to Treat GVHD (in alphabetical order)

8-MOP (see methoxsalen)

8-methoxypsoralen (see methoxsalen)