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  karend | published 4 days ago | Originally written in English Great Article about a family with FCAS

  This is a nice article about a family with FCAS that includes some in the UK and the US. www.grandforksherald.com/event/article/id/...
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  robpleticha | Medication, NOMID | published 9 days ago | Originally written in English Drug halts organ damage in inflammatory genetic disorder

  National Institutes of Health study suggests Kineret effective treatment for NOMID/CINCA

  www.nih.gov/news/health/feb2012/niams-10.htm
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  ambern | published 10 days ago | Originally written in English Son recently Dx with Muckle Wells Syndrome

  Hi, My name is Amber, I have a 4yr old that has just been dx with muckle wells. I am so blessed to have found Dr. Lowe in Birmingham,AL. Until now I felt like it was a uphill battle to get answers for my son. He started out with ezcema as a infant and we noticed it happened when we went back to Ky to visit family. He would often get mouth ulcers and have unexplained fevers and was hospitalized twice for this. Dr.'s acted as if it was always a random virus that they just couldn't explain. I noticed his pattern of mouth ulcers, fevers, rash, and joint pain and when I brought these symptoms up to his regular physician he looked at me like I was a nut. Even my husband wasn't understanding our sons battle with itching and knee pain. I was told Kids just get these things and since it goes away don't worry. I am very determined at this point and continued to take him back to the Dr. everytime these symptoms would arise. Finally he refered us to a pediatric Rheumatologist in Birmingham Al. We were there for several vists when he had no symptoms. This past Friday his Dr. met me in his office although he wasn't in clinic that day and after looking at his visible rash and red eyes, joint swelling, he said he has Muckle Wells. He had told me he thought that before and we had already had the genetic test done to see if he has the mutation but we are still waiting on results. Reading this forum I couldn't help but cry.Which sounds silly but just knowing that there are others I finally felt like there are people who understand. There is a lot of relief knowing your not alone.
  9 replies to the topic — see all replies

  • 
    Yufan published 8 days ago | Originally written in English

    Dear Karen:

    Thanks, that's a big help. I will go to check it out and bring it to my doctor.

    Yufan :)
  • 
    ambern published 8 days ago | Originally written in English

    I am sorry you are having trouble Yufan, I hope that your daughter gets approved soon! We got the news last night that my son was approved and we get our first batch on Friday. Yufan you were on my mind last night , I will be praying for approval for your daughter! Much love and thoughts your way!!
    Amber
    256-520-7168
  • 
    Yufan published 8 days ago | Originally written in English

    I am so happy for you. The nurse said we should get the answer from insurance company at the end of this week. I plan to call them again around thursday if I didn't heard from them.
    After reading Paul's message, I felt much better. Seems with the treatment, they still can have a pretty normal life.
    Good Luck to all of us.
• 
  Yufan | Treatment & Care | published about 1 month ago | Originally written in English MWS and Canakinumab

  My daughter just be diagnosed as MWS 2 days ago. She has serious inflammation on the day she was born. We have been to different doctors and specialists since she is a baby. Now she is 8, has pseudo tumor cerebri, hearing loss, and all other symptoms of MWS. She will begin her treatment 2 weeks later. Her doctor said she is the first case here at the Children hospital. It kind of makes me nervous about the treatment.

  I am still kind of lost here about the disease information and how is the cost of the treatment. Will insurance cover this treatment? I read a article about the cost of Canakinum is 100,000 a year???
  Also any long term effect on this drug?
  I have read some posts. Really helpful. Thanks for those who share their experience. It's let me feel we are not the only one here.
  7 replies to the topic — see all replies

  • 
    karend published 29 days ago | Originally written in English

    You are very welcome! Please do not hesitate to contact me for anything. We are here to help.

    Karen Durrant
  • 
    paul published 9 days ago | Originally written in French

    Bonjour Yufan,

    unfortunately, I can see that the message that I posted about 2 weeks ago on this forum is not showing. too bad !

    Has your daughter started her treatment?
    don't worry about the treatment, it's proven itself on adults as well as children.
    Right now, a follow-up on young patients (younger than two) in our association is very positive for canakinumab.

    in our family ten of us are being treated, either with anakinra (kineret) ou canakinumab (ilaris) and we have a good tolerance for the shots without side effects.

    for my two young children who are almost your daughter's age, treated with kineret, the daily shot, which was a little bit difficult at the beginning, is no longer a problem.

    to avoid pain, there are anti-pain patches

    one of our younger children no longer wants the patch, it is indeed constraining since you have to use it one hour before the shot.

    regarding hearing loss, one of our younger children has a hearing aid to go to school. Apres a year of treatment, he no longer uses her hearing aids. So you can have hope.

    For your doctor who is seeing his first case in his hospital, it is important to know that the medical community understands CAPS well now. During an international conference in Amsterdam, at which a representative of Nomidalliance was present with me and my wife, we could see that there were a lot of exchanges between associations of patients and doctors of the entire world. Publications are regularly updates on pubmed (in English)

    I noticed the same thing during a meeting organized in Barcelona (Spain) by Denis Costello who manages communities within Eurordis. During the visit in the hospital facility, the Spanish doctors showed us that they constantly communicate with their French colleagues and also with other world specialists.

    the cost of canakinum (ilaris) is very high: in France, 12.000 euros per shot every 8 weeks. It is very well covered by our public health system.

    unfortunately, it is not the case in Switzerland, Germany, Belgium, Russia et also where you live in the US.
    This is unfortunately the information gives by families who were contacted by our association AMWS-CINCA (www.amws-cinca.eu)

    You are lucky that you can count on Karen, whom I know well as we met in France last July - see the community report under the heading UNDERSTANDING and the title Fifth Anniversary. It was a very enriching meeting.

    To be read

    sincerely Paul President AMWS-CINCA (France)

    Notice: This text content has been translated automatically by a third-party service.
  • 
    Yufan published 8 days ago | Originally written in English

    Dear Paul:

    Thanks for your message. The most fear I had when I got the news was that I could not see my daughter grow up. After reading your message I feel much better. I can see she still can have a normal happy life in the future.
    Thank you very much !!!