Interleukin-2 (IL-2, Proleukin)

March 2007     View PDF     En español

What about side effects?

The type of side effects produced by IL-2 is generally predictable, though their severity varies widely. Nearly everyone experiences flu-like symptoms during the time therapy is administered. When the body fights off infec­tions, cells produce IL-2 to stimulate other cells necessary to control the infection. It’s the natural production of IL-2 and other immune chemicals that result in the aches and fevers associated with the flu.

Unlike anti-HIV therapy where only a relatively small percentage of people may experience a particular side effect, flu-like symptoms are both predictable and expected among the vast majority of IL-2 users. This side effect may be lessened by taking antihistamines and ibuprofen before taking IL-2. (NOTE: Some antihistamines may have serious interactions with protease inhibitors.)

People who are careful to follow side effect pre-treatment guidelines report that the first few days of IL-2 therapy are relatively easy. If side effects emerge, they usually are worst on the last two or three days of a five-day course. To minimize interference with day jobs, some people begin their five-day course of IL-2 on a Wednesday. This plan helps time the worst side effects to occur over a weekend or at a time when a person is not working.

People who take IL-2 recommend that you ask someone to stay with you overnight if possible, through the first five-day course. If that’s not possible, ask a friend to check on you periodically. If you have children, see if a friend or family member can take care of them for a few days as you may not feel up to the task yourself.

Experienced IL-2 users say that the more prepared you are, the easier it is and less likely that you’ll experience severe side effects. The worst side effects seem to happen when you let your guard down, aren’t prepared and don’t pre-treat for side effects. Ask for your doctor’s emergency number in the event you need or want support through the side effects.

Another relatively common side effect is swelling, red marks or lumps where you inject yourself. Long-time IL-2 users note that putting an ice pack on the injection site before and after injections can help diminish the develop­ment of swelling and bumps. The cold temperature has an effect that is identical to that of non-steroidal anti-inflammatory agents, such as ibuprofen, although it’s more concentrated at the site of the injection. Sometimes these lumps, or nodules at the site of injection, can last as long as a few months and they may even produce a scab. In nearly all cases they go away over time.

Other less frequent side effects include sinus conges­tion, low blood pressure, liver toxicity, swelling due to water retention, nausea and vomiting, diarrhea, peeling skin, changes in mental status and altered blood levels including albumin, potassium, magnesium, calcium, red blood cells and platelets. Nearly all side effects diminish quickly when the drug is stopped, usually at the end of a five-day course. In rare cases, IL-2 has been linked to hypothyroidism, vision problems (including blindness) and depression leading to suicide. There is a long list of potential side effects associated with IL-2. The most serious of these occur relatively rarely in doses used in people living with HIV.

As mentioned earlier, IL-2 can also temporarily stimulate HIV replication. Studies show that this viral activity can be controlled with the use of anti-HIV therapy. More importantly, these temporary increases don’t appear to have negative long-term consequences.

Certain side effects are potentially more severe and of greater concern than others. Contact your healthcare provider immediately if:

• You notice that you are making less than normal amount of urine or if you stop urinating altogether
• You have shortness of breath
• You have fever over 102° F that doesn’t go away with over-the-counter drugs
• You experience major changes in mental status, like confusion
• You faint, or
• You have major swelling in your face, neck, and/or feet.

For more information on IL-2 side effects and side effects management, read Taking IL-2 and Managing Its Side Effects.

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