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Taking IL-2 and managing its side effects

March 2007     View PDF     En español

Tips for managing IL-2 side effects

Fatigue, feeling tired

During the five-day course:

  • Plan your days to include rest periods. Change your normal routine as needed—don’t exercise or run errands.
  • If you work, plan to go home immediately after and rest—rent movies, watch TV, or simply lay around.
  • To avoid losing time from work, start your course three days before your weekend. The worst side effects will more likely fall on those scheduled days off.

Flu-like symptoms include fever, chills, sweats, joint pain, muscle aches, and other flu-like effects. These probably get worse throughout the five-day course and will subside almost immediately after it’s done. Fever, joint pain, and muscle aches generally do not occur until two to four hours after an injection is given.

  • Be prepared. If you feel feverish, lay down and stay down. This means preparing for your five-day course. Make meals in advance or have a supply of frozen foods on hand. Keep a supply of drugs on hand to manage side effects. In general, make sure you have everything you’re likely to need for five days because you may not feel like shopping.
  • Take ibuprofen (600mg every six hours) or acetaminophen (650mg every 4–6 hours, starting one hour before IL-2 dose) throughout the five days. Keep an icepack or cool cloth on hand to lower fever as necessary.
  • Drink lots of liquids high in electrolytes, not just water! This includes sports drinks like Gatorade and other "salty liquids" like chicken soup, vegetable juice (V-8 Juice), Pedialyte, etc. Start taking more of these types of liquids a day or so before beginning a five-day course.
  • As electrolyte imbalances may be a problem, consider taking oral magnesium and calcium supplements.
  • Shakes or chills may start within a half hour to an hour of an IL-2 injection. Keep warm with blankets, heavier clothing, or a space heater. Antihistamines (diphenhydramine, Benadryl, 25-50mg, as needed) may be used to prevent or treat mild-to-moderate chills. If they’re severe, the narcotics meperidine (Demerol, Mepergan) or morphine (Duramorph, MS Cotin, MSir, Oramorph, Roxanol) may be warranted.

Nausea, vomiting, diarrhea or loss of appetite. Nausea and vomiting can occur within 2–3 days after starting therapy.

  • For nausea or loss of appetite, consider eating more frequent meals of small amounts of soft, bland foods like mashed potatoes, rice and cooked cereals. Avoid spicy, greasy, or sweet foods. Also consider using dronabinol (Marinol) or natural alternatives like medical marijuana.
  • For diarrhea, try the B.R.A.T diet (bananas, rice, applesauce, and toast) or have bulking laxatives on hand.
  • Therapies that may help prevent or manage diarrhea include dipheoxylate/atrophine (Lomotil) or loperamide (Imodium), two tablets with each loose stool, not to exceed eight per day. Codeine or tincture of opium may be needed if less aggressive approaches are unsuccessful. Avoid caffeine in coffee, teas, and sodas and avoid alcohol.
  • Anti-nausea drugs, like prochlorperazine (Compazine) 5–10mg every 4–8 hours, as needed, with lorazepam (Ativan) 1mg every six hours, as needed may help prevent or treat nausea.

To prevent or manage skin rash, redness, itching, and peeling

  • Take lukewarm, not hot, baths or showers.
  • Use mild, unscented soap (such as Basis), or non-soap cleansers (such as Nutribiotic unscented non-soap).
  • Oatmeal soaps and baths may relieve red, itchy skin.
  • Pat, don’t rub, your skin with a towel to dry off.
  • Use mild unscented water or oil-based lotions or creams (like Aveeno) liberally and frequently to keep skin moist and prevent peeling. Don’t use lotions that contain alcohol. Use lotions a few days before and throughout the five-day course.
  • Avoid being in the sun. Wear hats and cover up while in the sun. Use sunscreen with a 15 or higher SPF rating.
  • Keep antihistamines on hand to help prevent or treat skin conditions.

To manage lumps under the skin at injection site

  • Bring IL-2 to room temperature for 15 minutes before injection. Icing the injection area five minutes before and after shots helps decrease lumps. Also, gently rubbing the area for 3-5 minutes after injection may help. Nodules may take weeks or months to disappear.

Mouth sores, tenderness, or discomfort

  • Rinse your mouth frequently with lukewarm water or saline rinses.
  • Avoid hot or spicy foods, and acidic fruits and juices. Eat soft foods that require little chewing.
  • Suck on sugar-free candy to help with dryness and soreness.
  • Use a very soft toothbrush and brush gently.
  • "Suspension" solutions that include anesthetics, antihistamines and antacids may relieve oral pain and discomfort (2% solution of kaolin pectate, Xylocaine, and Benadryl).
  • If you use mouthwash, be sure it’s alcohol-free.

Dizziness, lightheadedness, large changes in blood pressure

  • You can prevent changes in blood pressure by being careful when you move from a laying to standing position. If you are lying down, first sit up and make sure you’re not dizzy, then move to standing position.
  • If possible, keep a chair in or near the shower or bath.
    Hot water may make skin conditions worse. It also lowers blood pressure. Avoid hot showers/baths while taking IL-2.

Changes in sleep patterns, insomnia

  • Changes in sleep patterns may be related to IL-2 therapy. Antihistamines can cause drowsiness and a warm glass of milk may help.

Anxiety, depression

  • For anxiety, lorazepam (Ativan) 1mg daily or mild sleeping pills like flurazepam (Dalmane) may be useful.
  • Shortly following a five-day course, IL-2 users report mild depression. Being aware that this may be drug-related seems to help, as well as talking to others who use IL-2. In rare cases, attempted suicide and suicide have been documented and associated with IL-2 use. Shore up emotional support networks to help you.

Dry eyes

  • If you experience dry eyes, try using artificial tears.
 
     
 

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