Managing Common Side Effects from Your Medicines (Rheumatology)

These instructions are to guide Children’s Hospital of Philadelphia (CHOP) patients to manage common side effects for medicines used in Rheumatology.

Important information about side effects that require immediate attention:

If your child experiences any of the following symptoms, contact our office.

• Feels very tired or weak for more than 1 to 2 days after taking a dose of any medicine.

• Bruises easily, develops frequent nosebleeds, or bleeding gums.

• Develops a severe headache.

• Faints.

• Has swelling or pain at an injection site that does not go away.

• Has signs of an allergic reaction such as:

  • Swelling of the face, lips, tongue, or throat.

  • Trouble breathing.

  • Wheezing or chest tightness.

• Has been given too much medicine.

Some other side effects are milder and can easily be managed at home.

Instructions for managing mild side effects at home:

Nausea

Nausea is common with many of our medicines, especially methotrexate. There are 2 types of nausea commonly seen in our patient population:

Anticipatory nausea:

• Sometimes, people feel sick to their stomach before doing something that might make them feel sick, like taking medicine or getting a shot.

• This is called anticipatory nausea. In cases like this the child’s brain remembers feeling sick in the past and makes them feel sick even before anything happens.

• This can occur with a stressful procedure, activity, or taking a medicine.

• This is commonly associated with methotrexate but can occur with other medicines.

• Anticipatory nausea is a learned response caused by triggers. Triggers can be the sights, smells, places, or sounds of the medicine or the process of taking a medicine.

• The physical response is most commonly nausea. It may involve a rapid heart rate, sweating, and a feeling of irritability.

• Examples:

  • Your child gets very sick when they smell the alcohol swab prior to an injection.

  • Your child gets nauseous when they see a yellow liquid if they have been on methotrexate for a long time.

• Some strategies to help with anticipatory nausea include:

  • Desensitization (getting used to the unpleasant experience).

  • Distraction (thinking about something else).

• Many children will benefit from cognitive behavioral therapy and partnering with a therapist to develop a toolkit of coping strategies to overcome these challenges.

Nausea as a side effect

• On the other hand, feeling sick can occur because of things that are happening inside the body. This type of nausea is like when you eat something that doesn't agree with you.

• This kind of feeling sick is not because of thinking about it or being afraid of it.

Here are some tips and strategies to help manage nausea as a side effect.

• Speak to your healthcare provider if you believe your child needs medicine to help manage their nausea.

• Eat small meals throughout the day. Choose foods that are bland. Avoid sweets, spicy foods, fried foods, and strong-smelling foods. Try to rest after meals.

• Drink ginger and peppermint tea.

• Folic Acid and Leucovorin are medicines that are helpful in reducing nausea caused by methotrexate. Talk to your healthcare provider about a different medicine schedule that may be helpful.

• Aromatherapy can sooth feelings of nausea.

• Distraction can be helpful.

• You may try taking half of your methotrexate dose in the morning and half in the evening. Always discuss changes in your medicine schedule with your healthcare provider first.

• It may be helpful to change the time when your child takes the medicine. For methotrexate we recommend that your child take it at night and on a Friday or Saturday. This can help avoid not feeling well in school.

If your child is still experiencing nausea, speak to your healthcare provider about additional strategies. We may suggest changing the way you give the medicine, how much medicine your child takes, or switching to a new medicine.

Fatigue

Fatigue is a common side effect of many medicines. It is commonly associated with many rheumatic conditions. Some steps you can take to help combat fatigue include:

• Eat a healthy diet. Have healthy snacks available throughout the day. Stay well hydrated.

• Stay active.

• Focus on healthy sleep habits.

• Reduce stress. You may consider therapy.

• Plan ahead! Organize your tasks. Choose to do the things that are most important to you first.

Injection site reactions

Injection site reactions are very common. Some signs of an injection site reaction include:

• Redness

• Swelling

• Warmth

• Itching

• Mild pain or discomfort

• Lump under skin

How to manage an injection site reaction at home:

Be sure to allow the medicine to come to room temperature before giving.

Review how to give a subcutaneous injection to ensure you are giving the medicine correctly.

• Swelling and Redness: Using ice can help to reduce redness, warmth, and swelling. Avoid applying ice directly to the skin right after the injection. Use a cloth ice pack or place the ice over clothing.

• Soreness: Using a warm compress can be helpful later after the injection if your child experiences muscle soreness. Apply a warm compress for 10 to 20 minutes at a time.

• Itchiness: For sites that are red and itchy, you can give your child Benadryl®, Zyrtec®, or Claritin®.

• Pain: You can give your child acetaminophen (Tylenol®) or ibuprofen (Motrin®) if there is pain at the site.

Call our office to discuss concerns with our nursing team for the following reasons. Rheumatology office contact is 215-590-2547.

• If your child is still experiencing pain or discomfort after these initial steps.

• If your child develops a fever, pus at the site, or red streaking from the area.

• If the symptoms continue to occur or worsen.

When to Call 911 or go to the Emergency Room:

• Hives

• Swelling of the face

• Blistering of skin

• Trouble breathing

• Any other signs of an allergic reaction

Sun Safety

Some rheumatologic conditions and some of the medicines used to treat them can make your child more sun sensitive. This means that they may cause sunburns or skin rashes after sun exposure. Some of these medicines include non-steroidal anti-inflammatory drugs (NSAIDs, such as Naproxen (Aleve®), celecoxib (Celebrex®), antimalarials (Plaquenil® or hydroxychloroquine), and sulfa drugs such as sulfasalazine.

• What to use:

  • Use sunscreen that is at least 30 SPF. Lupus and dermatomyositis cause increased sensitivity to UV rays, so we recommend you use higher amounts of SPF. The higher the SPF, the more protection you will have from the sun. No sunscreen provides 100% protection.

  • Use Broad Spectrum sunscreens. This will protect your child from both UVA and UVB rays.

  • Use lip balm containing SPF to protect your child’s lips.

  • Products are available in lotions, creams, gels, oils, butters, pastes, rub-on sticks, and sprays.

  • Avoid wipes, towelettes, and powders.

• Application and Use

  • Apply 20 minutes before going out in the sun.

  • When applying sunscreen, be sure to cover the following areas:

    • Your child’s nose.

    • Front and back of the ears and neck.

    • Backs of the hands.

    • Along their hairline.

    • Anywhere their hair is thin.

    • Area of their feet exposed to the sun.

  • Reapply every 2 hours and more often when active, swimming, or sweating. Reapply “water resistant” products based on label instructions.

  • Keep sunscreen out of the sun.

  • Check sunscreen for an expiration date. Discard any products older than 3 years.

• Other ways to avoid sun exposure include:

  • Sun shirts.

  • Wide brimmed hats.

  • Avoiding direct sunlight especially between 11am and 4pm (when UV rays are highest).

  • Wearing long sleeved shirts and pants.

Reviewed November 2023 by Kerry Spichiger, DNP, CRNP; Melissa A. Lerman, MD, PhD, MSCE, Dori Abel, MD