Conversations tagged treatment-care

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  alicat2011 | Medication | published about 1 year ago | Originally written in English Canakinumab (Ilaris) muckle wells

  Hi there.
  My name is Alison and I would love to here from who is on Canakinumab (Ilaris) I'm on it, and next month will be my 5th dose. Also, if you have Muckle Wells, how has is your life improved?

  I really suffered with the rash, sore eyes and joint pains which had a major effect on my childhood and now touch wood thanks to Canakinumab (Ilaris) it is kept at bay

  My 3 year old child also suffers and I am thinking about once she turns 4, starting her on treatment that way she will have a better childhood hopefully.

  Reply to me with your thoughts...
  27 replies to the topic — see all replies

  • 
    karend published about 1 month ago | Originally written in English

    Dear Anna,

    Have you had any success with getting your daughter tested for CAPS, or have you been able to get her the medication? There is another family that has just joined this group that is from Russia, and it would be nice to find out if you have had any success with getting treatment for your daughter.

    Thanks,

    Karen Durrant
  • 
    AnnaKolev published about 1 month ago | Originally written in English

    Dear Karen
    I know - she has already called me. We have sent uor blood tests to NIH USA and after 1-2 weeks the result will be ready. I hope that they will advice me therapy ( if anakinra with which dose it;s better to start with maybe ones a week or I know that in USA be tablet therapy ( asatioprin sometimes ) can be used. By the way we are preparing all document to ministry of health to get permissin to supply anakinra from abroad for our children. I also have seen about study programmes for Ilaris - but they send me to Moscow office - where on information. How much Ilaris cost? Just to understand if our government will manage to buy it for us ? Anna
  • 
    karend published about 1 month ago | Originally written in English

    Dear Anna,

    I am very glad that the doctors at the NIH are helping you! This is good news. I had contacted them, but had not heard what had been done. It is also very good that you are working on trying to get permission from the government to have anakinra for your children. If you need help with this in any way, please let me know. You can email me directly at: karen.nomidalliance.org@gmail.com too. I have some forms that we can use to try to apply for the medication coverage, and I can try to help contact the drug company, but we will need to wait until your genetic testing is back. Your work with the government to get approval for this drug to be brought into Russia will be very helpful for your child, and many others too. Thank you!

    I am very glad that you are also talking with the other family from Russia on this group! I am hopeful that you have also been put in touch with the other 2 families in Russia that are getting help for their children that have CAPS too.

    As for the cost of Ilaris, it is very expensive, but in countries where the drug is approved, the insurance covers most of the cost, and there are patient assistance programs to also lower the cost to patients in the US. Anakinra is not as expensive, but it still costs a lot of money. In America, a month supply of anakinra based on 1 syringe a day of medication may cost around $20,000 a year, but Ilaris averages around $100,000 a year at the standard dosing. For some patients, they require higher doses of these medications. Here is an article about these drugs,a nd cost fro m2011: findarticles.com/p/articles/mi_hb4393/is_1...

    Anakinra works out to be around $1600 for 28 syringes (4 weeks supply). For a young child, this is more than enough medication to cover their needs, even if they need a higher dose, but as they get older, they will need a higher dose..

    One 150 mg vial of Ilaris costs around $16,000 but lasts for around 8 weeks for most patients, so it would cost around $8,000 a month, if you were getting Ilaris dosing every 8 weeks, or every 2 months (6 doses a year). Some patients need a much higher dosing of that medication, so the cost would be higher.

    So Ilaris costs about 8 times MORE money than the anakinra per year. Anakinra is a daily injection. Both drugs work very well for patients, so I am hoping that your government will approve one of them to help your child.

    Ilaris is approved by the European Medicines Agency for CAPS, but at this time anakinra is prescribed for CAPS as an off label prescription, which means that the drug is not officially approved at this time for CAPS by the medical agencies, as the drug was originally designed and approved for Rheumatoid Arthritis.

    I hope this helps!

    Karen
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  Yufan | Treatment & Care | published 4 months 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 4 months 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 3 months ago | Originally written in French

    Bonjour Yufan,

    hélas, je constate que mon message, posté voici une quinzaine de jours ne figure pas sur ce forum. dommage !

    Votre fille a-t-elle commencé son traitement ?
    ne vous inquiétez pas pour le traitement, il a fait ses preuves aussi bien sur des adultes que sur des enfants.
    Encore en ce moment un suivi de petits malades (moins de deux ans) de notre association est très positif pour le canakinumab.

    dans notre famille nous sommes dix à être traités, soit avec l'anakinra (kineret) ou le canakinumab (ilaris) et tous nous supportons bien les piqûres sous cutanées sans effets secondaires.

    pour mes deux petits enfants pratiquement de l'âge de votre fille, traités avec le kineret, la piqûre journalière, un peu difficile au début se passe très bien maintenant.

    pour éviter la douleur, il existe des patchs anti douleur.

    un des petits refuse maintenant le patch, c'est en effet une contrainte car il faut penser à l'apposer une heure avant la piqûre.

    en ce qui concerne la perte d'audition, un des petits était appareillé pour aller à l'école. Avec un an de traitement, il a abandonné ses appareils auditifs. Donc il faut garder espoir.

    Pour votre médecin qui voit le premier cas dans son hôpital, il faut savoir que la communauté médicale connait bien maintenant les CAPS. Lors d'une conférence internationale à Amsterdam, dont une représentante de Nomidalliance était présente avec moi et mon épouse, nous avons constaté un échange très important entre associations de malades et médecins du monde entier. Des communications sont régulièrement mises à jour sur pubmed (en anglais)

    j'ai fais le même constat lors d'une réunion organisée à Barcelone (Espagne) par Denis Costello qui gère les communautés au sein d'Eurordis.
    Lors de la visite dans les locaux de leur hôpital, les médecins espagnols nous ont montrés qu'ils sont en communication permanente avec leurs collègues français mais aussi avec d'autres spécialistes mondiaux.

    coût du canakinumab (ilaris) très élevé : en France 12.000 euros par piqûre toutes les 8 semaines. Très bien pris en charge par notre système de santé publique.

    hélas ce n'est pas le cas en Suisse, Allemagne, Belgique, Russie et aussi chez vous aux USA.
    Ce sont hélas des informations transmises par des familles qui ont contacté notre association AMWS-CINCA (www.amws-cinca.eu)

    Vous avez la chance de pouvoir compter sur Karen que je connais bien puisque nous nous sommes rencontrés en France au mois de juillet dernier -voir le compte rendu sur cette communauté dans la rubrique COMPRENDRE sous le titre Cinquième anniversaire.
    ce fut une rencontre très enrichissante.

    à vous lire

    bien cordialement Paul Président AMWS-CINCA (France)
  • 
    Yufan published 3 months 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 !!!
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  robpleticha | Treatment & Care | published about 1 year ago | Originally written in English Coping with Cold Weather and Flare Ups

  Hi there,
  Now that we are in Winter time, I was wondering if anyone had any tips to share on dealing with the cold weather. Is there any solutions that you have found useful to avoid flare ups of symptoms when the temperature is so cold outside?

  Is really the only solution to go to a warmer climate? Or is there something you can do while living in a cold climate to keep flare ups to a minimum?

  Be well,

  Rob
  3 replies to the topic — see all replies

  • 
    carew52 published about 1 year ago | Originally written in English

    Layers. Layers and more layers. Think five to seven layers at least. Under my nice dress trousers in winter is usually a number of leggings to help warmth, thermo tops and leggings help. Though considering I live in an area of Australia where we neve seen snow and minium never drops to 0, let alone below I' not to sure how much that helps.

    Once I use to have a electric blanket but had to leave it on all night but a few instances where I'd overheat and throw the blankets off and then get cold stopped that. Whatever it takes make sure that you don't fall asleep without being near certain that your not going to get cold overnight. Nothing worst then waking up cold in the early hours and knowing your going to feel a wreck when you have to get up in a few hours time.

    Convention says to put blankets under quilts but I often find the extra weight of blankets ontop of the quilt holds heat better. I also once had a enormous leather jacket which I laid ontop. Because leather isn't a breathable matriel it held in the warmth marvelously, keping me rather toasy indeed.

    Train yourself to get out of bed if you do wake up cold and put more layers on. I really hate it when you don't get quite cold enough to wake up proper and go back to sleep without putting on more layers and then I really feel aweful the next day.

    woolen hat, woolen scalf, woolen mittens with leather mittins on top to keep the heat in. wool fleeced jacket, a large leather jacket, get one with a hood if you can to hold heat in. In orther words whatever is necessary and you feel you can get away with even at work or when going out for dinner. I always look terribly bulky in winter, but its worth it. I love long sleeved turtlenecks, they can hide a multitude of layer sins with no one the wiser.
  • 
    robpleticha published about 1 year ago | Originally written in English

    Thanks for sharing your methods Sonia, all while it is Summer in Australia. We are getting hit by quite a bit of snow and cold weather this year in Europe. I hope everyone is using a lot of layers and staying warm while they sleep.

    Happy New Year from NORD and Eurordis!

    Rob
  • 
    robpleticha published about 1 year ago | Originally written in English

    Michael, you can find carew52's story on our site here:

    www.rarediseasecommunities.org/en/communit...
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  landryk | Treatment & Care | published over 2 years ago | Originally written in English Muckles-Wells Patient and Kineret

  This past winter was my first winter on Kineret. Here in New England, the weather is tough for CAPS patients.
  In December I cought a severe cold after getting a swine flue shot. A swollan lymph node in my neck sent my primary doctor in a frenzy. Sent be trough neck, chest and then full body scan. The fear of lmphoma was on my mind for three months. Doctor wanted to do a biobsy on a lymph node in my chest. After going to warmer client (Cancun MX). I was feeling much better. All lymph nodes are (I think gone). I still today have not gotten any biopsy.
  Is this what they call upper respitory infection? Is this going to be a common occurance when I get sick. Looking for input from others.
  Much appreciated.
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  rdc-team | Medication | published over 2 years ago | Originally written in English Two new treatments with indication for CAPS

  Information relating to two new treatments with an indication for the treatment of CAPS syndromes and which have recently received their Marketing Authorisation from the European Medecines Agency are available at the following URLs:

  For Canakinumab (Ilaris):
  www.ema.europa.eu/humandocs/Humans/EPAR/il...

  For Rilonacept (Arcalyst):
  www.ema.europa.eu/humandocs/Humans/EPAR/ar...

  Access to these treatments will not immediately occur in each of the European Member States - this can take time. Best consult with your doctor or specialist.

  In the USA the FDA provide information here:

  For Canakinumab (Ilaris):
  www.accessdata.fda.gov/scripts/cder/drugsa...

  For Rilonacept (Arcalyst):
  www.accessdata.fda.gov/scripts/cder/drugsa...

  Finally just a word to say that the aim of this post is simply to provide information. The decision to take any of these treatments should be done in consultation with a medical professional.
  One reply to the topic — see all replies

  • 
    rdc-team published over 2 years ago | Originally written in English

    Further information on Canakinumab (Ilaris®) in French published by the French Regulatory Authority - Haute Autorité de Santé is available at the following link:

    bit.ly/ilarisfr

    This document explains the conclusions from the 3 phases of clinical trials, compares the treatment to other available (prescription and off-lable) treatments for each of the CAPS syndromes and details the level of reimbursement in France to patients.