Conversations tagged medication

[ Expand all ]

• 
  Judith | Medication, FCAS, Rilonacept | published 22 days ago | Originally written in English Arcalyst/Rilonacept

  I was diagnosed with FCAS earlier this year and have been on Arcalyst for about three months. At first it seemed like a miracle, but now I am experiencing some breaking out. My current dose is 160 mg a week. My rhematologist seems reluctant to increase the dose, but, frankly I am his only patient with this disease. So, we are both pretty much in the dark regarding treatment. Are there physicians that specialize in this disease? Does anyone have information that might assist me? I live in the northern part of Texas if that will help.
  Thank you, Judith
  6 replies to the topic — see all replies

  • 
    karend published 20 days ago | Originally written in English

    Dear Judith,

    There are many experts for CAPS, but your area of Texas I am not aware of any at this time. I am currently in the hospital this week with a serious illness, but would like to talk with you when I am better about some options for doctors.

    For now, I would recommend that your doctor consult with Dr Hoffman, as suggested at UCSan Diego on dosing. You can have a higher dose, and it has been researched. This will help you.

    Also take a look at the website for arcalyst on Regeneron.com for info.

    If you can send me an email to karen.nomidalliance.org it will be easier for me to connect you with doctor's, since I am in the hospital on an iPad for now. I then can answer you better when I am well. The good news is that there are 3 medications in the US that can help, in case you need to try a different option. All work very well for CAPS. We have info about all 3 medications on our website nomidalliance.org in the Learn area under CAPS treatments, and links to the drug info and websites for each medication.

    Best wishes,

    Karen
  • 
    Judith published 18 days ago | Originally written in English

    Dear Karen,

    I am truly sorry that you are in the hospital. I pray that you will recover quickly and go home soon!
    I have tried to send you an email and have not been able to get it delivered.
    I will give Dr Hoffman's info to my rheumatologist this week. Perhaps by my appointment in mid June
    he will have some options on medications. Thank you so much.

    Sincerely,

    Judith
  • 
    karend published 17 days ago | Originally written in English

    Dear Judith,

    So sorry! I was so sick I did not put my correct email address up! It is karen.nomidalliance.org@gmail.com or you can email through our contact us area on our website, nomidalliance.org So sorry for that, and thanks for the well wishes.

    Please try to email it again! I will try to find some doctors closer to you. I do know that some people have found doctors in other areas of the state, but very few have found anyone with much experience with CAPS. There are some doctors in MO, OH, and GA, and also Dr Hoffman in San Diego, CA. Here is the info for DR Hoffman so your doctors can contact him:

    Dr Hal Hoffman
    9500 Gilman Drive, Room 5086
    La Jolla, CA 92093-0635
    Tel: (858) 534-2108
    Fax: (858) 534-2110
    E-mail: hahoffman@ucsd.edu

    He has the most patients with FCAS, and also discovered the gene for CAPS! He has done research with all the current medications for CAPS, and would be a good resource for your doctor. He went to Med School at U.Texas at Galveston, so he may have some suggested doctors too.

    I went home from the hospital with a PICC line to keep giving myself IV medications from home for the next 2-3 weeks. (I am also an RN). It is a long story, and the infection was very severe in an area that had previously had surgery and radiation for breast cancer, and I almost had to have more surgery for this! I do not have CAPS, (my middle son does)so this was not CAPS related. However,t I was so sick that my C-reactive protein, ESR and other labs were as high as many with severe CAPS, and boy did I feel horrible from inside my bones, muscles to my head from the inflammation, along with a high fever! I can only imagine what it must feel like for people with CAPS, which is different, but people suffer really bad every day.

    I hope that we can connect and help you through email too.

    Thanks,

    Karen Durrant
    nomidalliance.org
• 
  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
• 
  robpleticha | Medication | published 3 months 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
• 
  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.