Rilonacept (Injection)

As an interleukin 1 inhibitor, Rilonacept can help lessen the symptoms and signs of cryopyrin associated periodic syndromes (CAPS).


Rilonacept is a dimeric fusion protein. The drug is given as a shot which is normally administered by a nurse or doctor. The shot is injected into the fatty area of skin on the belly, the top of the thighs or the upper arm. If you have to inject yourself, your medical professional will show you how to do so, and it is important to move the site of the shot each time you have to inject yourself with the drug.

Rilonacept helps to alleviate the symptoms associated with Cryopyrin-associated periodic syndromes (CAPS) which can include the following:

  • Rash
  • Joint pain
  • Fever or chills
  • Fatigue
  • Eye pain or redness

There are some other, more serious symptoms of CAPS too, but these are rarer. The types of symptom experienced depend on the type and severity of the syndrome. Cold weather often causes flares for those suffering from CAPS, and even exposure to mild cold can bring about an inflammatory response, which Rilonacept can be used to manage the symptoms of.

Conditions Treated

  • Cryopyrin associated periodic syndromes (CAPS)
  • Muckle-Wells syndrome
  • Familial cold autoinflammatory syndrome.
  • Neonatal onset multisystem inflammatory disease

Type of Medicine

  • Interleukin 1 inhibitor

Side Effects

When taking any drug there is the risk of side effects. However many patients have no side effects or only suffer from minor side effects. If you experience any of the following side effects or any other side effects which persist, you should call your doctor:

  • Cough, stuffy nose and other signs of a cold
  • Irritation on the skin where the shot was administered
  • Allergic reaction such as hives, a rash etc.
  • Chills or fever
  • Unusual weakness or tiredness
  • Body aches and pains
  • Ear congestion
  • Sneezing
  • Difficulty breathing

Other side effects which have been reported by patients taking Rilonacept include stomach pain, black, bloody or tarry stools and throwing up blood as well as nausea, vomiting and diarrhoea. Although these side effects are less commonly experienced if you suffer from any of them you should contact a doctor urgently. Patients have also reported numbness and tingling, allergic reactions leading to breathing difficulties or swelling of the face and signs of infection such as fever and chills, pain passing urine, ear and sinus pain or a very sore throat. It is important not to delay if you are experiencing any of these more serious side effects and to see your doctor immediately, as they may reduce your dosage or tell you to stop taking Rilonacept immediately.

Whilst most patients taking Rilonacept will only experience minimal side effects if side effects persist over time or worsen then the patient should follow up with their doctor without delay. The drug is generally given because the benefit is greater than the risk of side effects.

Common side effects that do not require medical attention will usually go away over the course of treatment. If you suffer from side effects such as pins and needles, tingling feelings or a burning, crawling sensation on your skin, then it is best to keep taking Rilonacept to wait and see if these side effects subside. You can see your doctor for ways to reduce or prevent these common side effects or if these side effects persist or are bothering you.


The manufacturers of Rilonacept have provided general dosage instructions, but the dose given may be altered by the patient's doctor according to their needs.

For treatment of symptoms associated with Muckle-Wells Syndrome in adults, a loading dose of 320mg should be delivered as two 2mL subcutaneous injections of 160mg each. These should be delivered on the same day and it is important to use two different sites. Thereafter, dosing should continue once a week with an injection of 160mg as a single 2mL subcutaneous injection. Rilonacept should not be given more than once a week.

For treatment of symptoms associated with familial cold autoinflammatory syndrome, a loading dose of 320mg should be delivered. This should be in the form of two 2mL subcutaneous injections of 160mg each, delivered on the same day at two different sites. An ongoing dose of a once a week injection of 160mg administered as a single 2mL subcutaneous injection should be given thereafter.

Rilonacept can also be given to children aged 12 or over but if your child is younger than this then your health professional will be able to advise. For children aged 12 or over suffering from familial cold autoinflammatory syndrome, a loading dose of 4.4mg/kg up to a maximum of 320mg should be administered as either one or two injections (with a maximum single injection volume of 2mL). If two injections are required then these should be given on the same day, at two different sites. Thereafter a once a week injection of 2.2mg/kg up to a maximum of 160mg should be given as a single subcutaneous injection of up to 2ml. The same dosage instructions should be followed for children suffering from symptoms of Muckle-Wells Syndrome.

It is important patients follow the dosage instructions provided by their doctor as these may be different from those stated above. If you do not understand the dosage instructions or any part of the label on your prescription medication, you can ask your doctor or pharmacist for advice.

it is important not to take more or less Rilonacept than your doctor has prescribed. If you experience side effects of this medication or if your condition does not improve, your doctor may decrease your dose or tell you to stop taking Rilonacept. It is important that you do not decrease your dose or stop taking this medication unless your doctor tells you to.


There is a chance that drugs prescribed can interact with other drugs in the body. This could lead to side effects or could change the effects each medication has on the body, causing a dangerous reaction for the patient. It could even mean that one drug becomes ineffective at treating a condition. It is important to be aware of any other medication being taken, including the frequency and dosage. Below is a list of the drugs known to have interacted with Rilonacept, although this list is not exhaustive. Using this medicine with the following medicines is not recommended and the patient should notify their doctor before taking their first dose of Rilonacept, as interactions have been reported:

  • ACAM2000 (smallpox vaccine)
  • Actemra (tocilizumab)
  • Adalimumab
  • Amjevita (adalimumab)
  • Arava (leflunomide)
  • Atenean (measles virus vaccine)
  • Aubagio (teriflunomide)
  • BCG
  • Biavax II (mumps virus vaccine/rubella virus vaccine)
  • Certolizumab
  • Cimzia (certolizumab)
  • Cyltezo (adalimumab)
  • Dryvax (smallpox vaccine)
  • Enbrel (etanercept)
  • Erelzi (etanercept)
  • Etanercept
  • Fingolimod
  • FluMist (influenza virus vaccine, live, trivalent)
  • FluMist Quadrivalent (influenza virus vaccine, live, trivalent)
  • Gilenya (fingolimod)
  • Golimumab
  • Humira (adalimumab)
  • Imlygic (talimogene laherparepvec)
  • Inflectra (infliximab)
  • Infliximab
  • Influenza virus vaccine, h1n1, live
  • Influenza virus vaccine, live, trivalent
  • Ixifi (infliximab)
  • Kevzara (sarilumab)
  • Leflunomide
  • M-M-R II (measles virus vaccine/mumps virus vaccine/rubella virus vaccine)
  • M-R-Vax II (measles virus vaccine/rubella virus vaccine)
  • Measles virus vaccine
  • Measles virus vaccine/mumps virus vaccine/rubella virus vaccine
  • Measles virus vaccine/mumps virus vaccine/rubella virus vaccine/varicella virus vaccine
  • Measles virus vaccine/rubella virus vaccine
  • Meruvax II (rubella virus vaccine)
  • Mumps virus vaccine
  • Mumps virus vaccine/rubella virus vaccine
  • Mumpsvax (mumps virus vaccine)
  • Natalizumab
  • Orimune (poliovirus vaccine, live, trivalent)
  • Poliovirus vaccine, live, trivalent
  • ProQuad (measles virus vaccine / mumps virus vaccine / rubella virus vaccine / varicella virus vaccine)
  • Remicade (infliximab)
  • Renflexis (infliximab)
  • Rotarix (rotavirus vaccine)
  • RotaShield (rotavirus vaccine)
  • RotaTeq (rotavirus vaccine)
  • Rotavirus vaccine
  • Rubella virus vaccine
  • Sarilumab
  • Simponi (golimumab)
  • Simponi Aria (golimumab)
  • Smallpox vaccine
  • Stamaril (yellow fever vaccine)
  • Talimogene laherparepvec
  • Teriflunomide
  • TheraCys (bcg)
  • Tice BCG (bcg)
  • Tice BCG Vaccine (bcg)
  • Tocilizumab
  • Tofacitinib
  • Typhoid vaccine, live
  • Tysabri (natalizumab)
  • Varicella virus vaccine
  • Varivax (varicella virus vaccine)
  • Vivotif Berna (typhoid vaccine, live)
  • Vivotif Berna Vaccine (typhoid vaccine, live)
  • Xeljanz (tofacitinib)
  • Xeljanz XR (tofacitinib)
  • Yellow fever vaccine
  • YF-Vax (yellow fever vaccine)
  • Zostavax (zoster vaccine live)
  • Zoster vaccine live

There have also been a number of drugs which have been known to have moderate or minor interactions with Rilonacept, so it is important that patients tell their health professional about any medicine they are taking.


Patients should always advise their doctor of any allergies as well as discussing their medical history and any current health problems. You should tell your doctor and pharmacist if you are allergic to Rilonacept or any of its ingredients. Patients taking Rilonacept should tell their doctor if they have any existing medical problems:

Patients should tell their doctor and pharmacist about any other prescription and non-prescription medication, nutritional supplements, herbal products and vitamins they are taking.

It is important that your doctor check your progress at regular visits to make sure that Rilonacept is working properly. The body's ability to fight infection can be reduced whilst taking this drug, so it is vitally important to tell your doctor if you are experiencing the first signs of infection such as painful urination, chills or fever or a cough or hoarseness. Patients should try to avoid spending time around others with a cold or flu as they could be more prone to infection.

Patients being treated with Rilonacept should ensure they do not have any vaccinations (immunizations) without getting the approval of their doctor first. This is because Rilonacept can lower the body's resistance and you may end up with the infection the vaccination was supposed to prevent. If you have received any vaccinations in the past you should ensure you tell your doctor about these. Ask your doctor whether you should receive any vaccinations, including pneumonia and flu shots, before taking Rilonacept.

Before taking Rilonacept, patients will need to undergo a skin test for tuberculosis and it is vital to tell your doctor if you or any of your family members have ever had a positive reaction to a tuberculosis test. This test is necessary as tuberculosis has been seen in some patients who were taking Rilonacept.

Using this medicine may increase your risk of certain types of cancer and it is recommended you speak to your doctor about this risk. This medicine can also cause high cholesterol and triglyceride levels and you should discuss this with your doctor.

In some cases, taking Rilonacept may cause a serious allergic reaction. Check with your doctor right away if you have any of the following symptoms:

  • Rash
  • Swelling of the face, throat or tongue
  • Itching
  • Difficulty breathing
  • Chest pain

It is important not to take adalimumab (Humira®), anakinra (Kineret®), etanercept (Enbrel®), or infliximab (Remicade®) while you are being treated with this medicine, unless your doctor says it is okay.

Rilonacept should only be given during pregnancy when the benefits outweigh the risks. Caution should be taken when taking this drug if you are breastfeeding and you should discuss this with your doctor or health professional.


Rilonacept should be stored in the fridge, as the medication must be kept at 2 to 8 degrees Centigrade (36 to 46 degrees Fahrenheit). Rilonacept should be stored in its original container which protects it from light. You should never use this medication beyond the date stamped on the label.

After being reconstituted with sterilized water, the drug should be stored at room temperature and should be used within 3 hours of reconstitution. Unused portions of Rilonacept must be discarded, as the drug does not contain any preservatives.

It is important to dispose of unused medication properly to ensure that children and pets cannot consume them. Rilonacept should not be flushed down the toilet. The best way to dispose of any unneeded medication is to use a medicine take-back program. Details of local schemes available in your area can be obtained from your community recycling department or pharmacist. If you cannot access a medicine take-back program then you should visit the FDA's Safe Disposal of Medicine website for further information on how to safely dispose of your unwanted medicine.

It is important that all medicine is kept out of sight and reach of children at all times. Many containers are not child resistant and can be easily opened.


Rilonacept is a beneficial interleukin 1 inhibitor but, like any drug, it can pose a risk should patients fail to communicate properly with their pharmacist or doctor. As a treatment for cryopyrin associated periodic syndromes (CAPS), it works to reduce the signs and symptoms of Muckle-Wells Syndrome, neonatal onset multisystem inflammatory disease and familial cold autoinflammatory syndrome.

Rilonacept works by attaching itself to chemical messengers in the body called interleukin-1beta and interleukin-1alpha. The former of these is produced at high levels in patients with CAPS and causes inflammation. Rilonacept works to inhibit the production of interleukin-1beta, thus reducing symptoms associated with CAPS.


Last Reviewed:
January 30, 2018
Last Updated:
January 27, 2018
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