CAPS. Muckle-wells syndrome

Others with the same symptoms as my child.

Written by joanreusshansen, published over 3 years ago.

Selina has been ill for the last 5 years with a lot of different symptoms. She has had: fever, abdominal pain, kidney, pelvic inflammation, rashes, joint pain especially in the knees and arms. As well as various inflammations of the rest of the body.

After a lot of misdiagnosis at several hospitals in Denmark, we got Selina's diagnosis of Muckle-wells syndrome in May 2012.

She has been treated with kineret for a year now, but there are still attacks about every 6-8 weeks with particular joint pain and little fever at the same time.

I would really like to connect with others who have similar symptoms, and especially with regard to treatment / medication.

Written by joanreusshansen, published over 3 years ago.

2 comments for «CAPS. Muckle-wells syndrome»

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  • karend | published over 3 years ago | Originally written in English

    Dear Joan,

    Welcome and thank you for sharing your daughter's story. Do the attacks of symptoms happen after exposure to cold, or are they random? Is she having any other symptoms more frequently, such as red eyes, or rash? The doctors may want to monitor her symptoms, and also her lab tests for inflammation to see if they need to increase her dosing of medication. It is possible to have very good disease symptom control on these medications. My middle son has NOMID-a form of CAPS and had been on anakinra then he switched to Ilaris for a few years. He has recently returned to using anakinra. Your child's symptoms are very similar to many other patients, and to my son too.

    I am so sorry to hear that your child was misdiagnosed for so long! If there is anything we can do to help, please let us know. I also run The NOMID Alliance for patients with CAPS and autoinflammatory diseases, but we only have our website in English, Spanish and French right now

    I would also like to have you connect with Paul that runs the AMWS-CINCA patient organization for CAPS in France. He is the best resource for information in Europe.

    Best wishes,

    Karen Durrant

  • joanreusshansen | published over 3 years ago | Originally written in English

    Hi again.
    Im very happy that you Will write back to me. Thank you so much.
    Selina have a lot of rash on her body.
    Right now she has regained a lot of pain In the Right knee. She has been on Daily treatment whit kineret for a year now, and i dont Think it has the Right effect, because she still get ill every 6-8 week.!
    The hospital Will not let her go on ilaris, because the medicine is to expensive.!!!!!!
    We are going to a new hospital tommorow, and i cross my fingers, that they Will maybe Think about change it to ilaris.

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