I have been on Kineret and I responded to the treatment very well, then due to insurance reasons I switched to Arcalyst. I am not responding as well to the Arcalyst and discussed with my doctor switching back to Kineret at which point he told me about the new Ilaris. I was wondering if anyone has had experience with the Ilaris and would be willing to share that experience so that I might be able to make a more educated decision about going back on Kineret or trying the new Ilaris.

Hi, My son was on Kineret for 4.5 years ,then he went onto Ilairs in the NOMID/MWS Novartis study over a year ago. He was on 3 mg/kd/day of Kineret to cover his symptoms, and was very stable on the Kineret before going onto Ilaris. My son has a mild form of NOMID. He started on Ilaris at the standard dose, but had to go to a double dose a few months later, and no he is on a triple dose to cover his symptoms. When he is on Ilaris, his symptoms are completely covered almost all the time ,and he is as stable on it with his inflammatory labs and such as on the Kineret. So my son is as good on Ilaris and Anakinra on a lab and medical standpoint, and also on his daily symptoms, which are none most of the time! He had an occasional cold flare after swimming for hours in the cold ocean (we live in San Francisco and the water is 50-60 degrees , but usually more like 50!) He used to have rare cold flares with anakinra in such circumstances too, but before going on any medication, he was flaring all the time, and there was no correlation with cold for him, as he was so affected. As far as cost, Ilaris is suposedly less expensive as Arcalyst, and Ilaris is one shot every 8 weeks, versus wekly, and of course anakinra is daily. My son loves not having a daily shot! We are trying to get Ilaris covered and approved by our private insurance, as the Ilaris study is ending. There is an Ilaris patient support center that can help you. Call 1-866-972-8315 (USA) to talk to them more about Ilaris and getting it with your insurance. Kineret is very good, and easy to adjust dosing to get the right coverage as it is a daily dose. It may take adjustment of your arcalyst dose to cover you completely, and the same with Ilaris, but it can take a bit of time due to the more infrequent shot regimen. My son was on a higher dose of anakinra as he has NOMID, and most patients with the more symptomatic forms of CAPS like NOMID that I have heard from are also on higher doses of Kineret, and the same for Ilaris. Most with FCAS and MWS do not need to have the triple dosing like my son, and have had great control of their symptoms with all these drugs. Good luck! You can call me at 415-831-8782. I am also the President of The NOMID Alliance, www.nomidalliance.net that is dedicated to increasing awareness. care and treatment for CAPS. Karen

Hi I was diagnosed with CAPS last December (09). Initially, I was put on daily doses of Anakinra then moved in March to Ilaris known as Canakinumab in the UK. I take a double dose and my caa readings are nearly normal now. My caps seems to be controlled at present and I attend hospital 1 day a week to see experts on associated problems such as hearing. vision , balance and other problems created by Caps. The Hospital I attend is the only one in UK treats CAPS and the experts there are the leading in Europe. Fortunately, all treatment is covered by the National Health Service so cost is not an issue. If anyone has any questions, I would be happy to answer Alan

Dear Alan, I am glad to hear that you are doing well on the Canakinumab (Ilaris) too! My son is on a high dose to control his symptoms from CAPS (he has NOMID/CINCA) but it is working well. He gets 8 mg/kg every 6 weeks (3 times the usual starting dose, and a little more frequent.) What hospital to you go to in the UK? I know of mostly pediatric patients in the UK that go to Great Ormond, but wondered if there was another hospital too. There are some doctors caring for CAPS patients in various parts of the UK that I know about, but most are around London. Best wishes, Karen

Hi Karen, lovely to hear from you. I am treated by the Amyloidosis Unit in the University College London section of the Royal Free Hospital, Hampstead London NW3. To my knowledge, this is the only specialist centre in the UK.. Everyone travels here. My lead Doctor is Helen Lachman.. She headed up the European trials of Ilaris and has written a number of articles on caps. They originally thought I had MW as I had all the symptoms. However, after exhaustive testing including a 3 week hospital stay, they now think I have a previously unreported type and refer to me as having a Bizarre variant CAPS. I have MW except it is not genetic and late onset in my 40s. The caps has attacked my brain causing damage to my optic nerves and swelling of the brain, heart blockage , osteoporonia, loss of balance many other symptoms. However the hospital is great and I have my own dedicated nurse with 24hr access and Dr Lachman is fantastic. The whole ubit are great and help me through the worst. Alan

Dear Alan, Wow, sorry to hear that this hit you in your 40's like that. I have heard of some other variants of CAPS, but you are very unique. Best of luck! Dr Lachman is amazing from what I hear. There are quite a few doctors interested in CAPS in the UK, but I hear mostly about Dr Lachman, Dr Woo (Great Prmond) and Dr Hawkins (the expert on Amyloidosis and CAPS by far!) Have you heard about the new online community for CAPS patients sponsored by EURODIS and NORD? (rare disease non-profits) Our organization, The NOMID Alliance (www.nomidalliance.net) is involved too (we are not just for NOMID ,but help all CAPS and autoinflammatory diseases that come our way.) Check out the new online place for CAPS patients at: http://www.rarediseasecommunities.org/en We also have a facebook Cryopyrin-Asssociated Periodic Syndromes (CAPS) group and there are others too. Best wishes, Karen

Hi Karen Thanks for the pointer to the caps community. Will certainly check that out. It has been a real hammer blow going from fully active with a few aches and pains and an occasional rash to housebound and chronically ill. Hard to talk to anyone as they don't understand. I look physically fit and trying to explain what I suffer from, its symptoms and how I feel sounds, even to me, like I am exaggerating for effect so I try to play it down and then people its a minor and expect you to just get on with it. I just retreat within myself and stay away from people Alan

Dear Alan, I think that what you are saying about your feelings fits with so many with CAPS of all forms, and also many others with chronic diseases! In fact, I know of one lady with MWS that went into the field of psychology years before she was properly diagnosed with MWS because everyone told her it was psychosomatic (how can you make a rash, hearing loss etc happen that way is ridiculous) and she was struggling ,and wanted to find out ways to cope. I hope that somehow we can help address this issue, as it is one of the hidden ways people suffer with this condition. I have to say that some of the most resilient, amazing and brave people I have met have CAPS and other rare diseases. I just got over battling early breast cancer and chemo, and yet am in awe of what so many have had to live with every day of their lives with this disease, but thankfully it has gotten better for most after medications have begun. My son has had his life change dramatically ,and was spared great damage since he got to start anakinra at 4.5 years of age. In 2004 he was the youngest kid at the NIH, the first place starting the studies for anakinra in the US. Now I hear from parents with infants being diagnosed and started on meds before the age of 1! They will never know the suffering like the others that came before them with CAPS, thank goodness. There is another forum, Cold Urticaria Info Island on multiply.com that is for people with FCAS, MWS and NOMID, and used to be more active. There are a lot there that can relate to you too. I hope that you can meet some other patients in the UK soon, and that you feel better too! Karen