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There is no cure yet for the cause of CAPS. However, based on the type of CAPS that you have and how bad your symptoms are, your doctor may suggest any of the following current treatment options to attempt to manage the symptoms of CAPS.

These treatments may be used alone or in combination, depending on the doctor's advice*:

  • NSAIDs (nonsteroidal anti-inflammatory drugs) may be used for FCAS, MWS, and some NOMID/CINCA patients
  • Antihistamines may be used for FCAS patients
  • Steroids may be used for FCAS, MWS, and NOMID/CINCA patients
  • Immunosuppressants/immunomodulators may be used for MWS and NOMID/CINCA patients

Although these treatments may be helpful, certain symptoms may not be relieved and others may not be relieved for long. This is because these treatments target only the symptoms while working to reduce inflammation overall.

Future Treatments for CAPS
Research continues in the search to find a more complete treatment for CAPS that addresses more than just the symptoms. Targeted treatments are in development at this time for medications that will actually target the underlying cause of the inflammation and symptoms of CAPS.

Researchers believe these medications may have the ability to treat the inflammation in CAPS better and help stop symptoms from becoming worse. These medications are not yet approved, but they are being studied in clinical trials.

When Will New Treatments Be Approved?
Before a drug can be approved to be used, it has to go through clinical trials to show that it works. People who take part in these trials volunteer if their doctors think that it is a right match.

By participating in these trials, patients have the opportunity to receive medication for their disease that may not be available to the public yet.

Sometimes a person in a trial is given the actual drug being studied. Sometimes they are given a different drug that is already approved to treat the symptoms. At other times, a placebo is given.

Every trial needs a certain number of people to take part in it. Some trials can be as short as 1 month, while others can last 1 year or more.

There is no cost to take part in a trial. All drugs and doctor visits are free.

If your doctor diagnoses you with CAPS, you can ask him or her about how you can join any of these ongoing trials.

What Else Can I Do?
If you have FCAS or MWS, your doctor may also suggest these actions to ease your symptoms:

  • Keep warm with a hot beverage, warm bath, or layers of clothing
  • Cut back on heavy exercise
  • Avoid things that cause you stress on a regular basis

In some serious cases, these changes may not help. CAPS sufferers who get cold easily and find their symptoms becoming worse may consider living somewhere where the weather is warmer. This can help relieve symptoms.

*Remember: follow only your doctor's advice about treatment.

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Patient Story

I remember how hard it was when I was little. I never had any energy, and spent so many evenings shivering on the sofa at home under a pile of blankets rather than spending time with friends. I was always just freezing! I'd also get these nasty rashes, usually on my arms and face. Nobody knew it was Muckle-Wells. we had nver heard of it before. When I eventually got a diagnosis and met other people who'd been living with the same thing I felt so emotional. Now, with treatment, for the first time ever I know how it feels to feel normal it makes me realise how bad I felt before. I don't know how I coped!

Symptoms
The symptoms of all 3 types of CAPS are a result of the body's reaction to inflammation. The body responds to inflammation with soreness and swelling.

Some people may not know that they have CAPS, but their symptoms will make them aware that something is wrong. If you think you may have CAPS after reading this online resource, you should see a doctor.

If the doctor diagnoses you with CAPS, he will provide treatment to address the inflammation and any symptoms that may follow.

How Do I Know if I Have CAPS?
Any of the symptoms of the 3 types of CAPS can range from extremely uncomfortable to disabling in severe cases. Even if they are mild and don't seem to always be there, it is important to bring these symptoms to a doctor's attention.

Think about the answers to these questions:

  • Do you get frequent rashes, fevers, or headaches?
  • Do you feel a strong reaction to cold temperature?
  • Do you always feel like you have the flu?
  • Does your body ache constantly?
  • Have you felt the same aches since you were a child?
  • Do your aches seem to be getting worse?
  • Have any of your family members or relatives ever suffered similar symptoms?
  • Do any of your family members or relatives have CAPS?

Talk to your doctor about your answers to these questions. Details about your symptoms and your family history will help the doctor make the correct diagnosis.

Print this CAPS Patient Booklet along with you to help you remember what you want to talk about.

It is important to be diagnosed and get treatment from your doctor. Current treatment can help relieve symptoms and, in some cases, may eliminate them.

If you do have CAPS, your doctor will arrange to treat the symptoms with one of the medications available.