has anybody been diagnosed with mws in their 40's.

Not 40s but I've just been diagnosed in my 30s and my Dad is 60 and also recently diagnosed. The doctors have been doing quite a few checks for signs of amyloidosis. Especially on my brother and Dad who have been found to have kidney issues. Dad is quite deaf now and my brother and I wear hearing aids. Luckily we've been found to be generally in good health in spite of lifelong untreated muckle wells. It's been amazing getting some answers to some of the strange things that we've experienced as a family. Hope you're doing OK.

did you have the blood test done to confirm this? also do still have fevers ever day.

Well we never did get daily fevers. We do get daily hives outbreaks but these have stopped with the anakinra. We have had the genetic test done for confirmation. We needed to do this to get funding for the anakinra even though we were spot on with the clinical symptoms. We're not in the US and some of us are at different hospitals, so we've had one test through the UK, one in the Netherlands and one in the US depending on the doctor's preferences/hospital policy.

thanks for responding to me. what other medicines r u taking. also how much did the bloodtest cost you out of pocket. also is there a specialist in Australia who deals with muckle wells

Which state are you in? We're not taking anything other than anakinra for this. My Dad and brother have kidney issues and I think are taking something extra for that but I'm not sure what.

i live in cincinnati ohio in the states. i am trying to find if their is a specialist who has treated an adult who have been diagnosed with mws. my dr here here has never had a patient with mws. i would be his first. i have not had the blood test yet, i would like to get some more information and speak with a dr who has actually had patients who they have treated.

I would try contacting the Nomid Alliance. They've been very helpful to me and would most likely know who might have experience dealing with Muckle Wells/Nomid/FCAS patients in the States. They have a website with an email address and phone number under the 'Contact Us' section. Good luck.

thanks so much for all your help. good luck to you and your family also

My daughter is 10 years old and was diagnosed in the Spring of 2010 w/MWS and we are located in Eaton, OH. She sees Dr. Esi Morgan-DeWitt, a rheumatologist at Cincinnati Childrens Hospital but our family doctor in Eaton, OH was actually the one that discovered MWS for my daughter. We have been puzzled with all of her symptons for her entire life so were thankful for finally getting a diagnosis. She takes a shot of Ilaris once every 8 weeks and all her symptons are under control now. She feels so good now. I would definitley recommend the NOMID Alliance also.

thank you i will give her a call.

new here. 1st question:what is CAPS, NOMID??? my son is 15 and diagnosed with MW as a toddler. when he started walking he beagn limping although his walking skills were great. when he was placed on solid foods we were told he had food allergies because the rash came with certain foods, so we thought. knowing now of dx we know it was just a coincedent and that the rash was from MW. when he was dx we had to go to bethsheba, MD to find out a definitive dx. a doctor at vanderbilt actually mentioned it but i couldn't believe it. no dr knew anything much about it then. stat were 1 in 5million have it if i am not mistaken. now being diagnosed so the cases are on the rise.he did ok off and on, went few mths without rash but now all of a sudden it is back in full force. he never had a lot of energy and tired easily. he complained of ankle pain but mainly after sports.NOW he is getting rash mainly on his legs(totally covered), more pain in joints, mouth sores like fever blisters and stomach problems mailny at night which consists of throwing up and some diarrhea. I NEED TO FIND a DR that is closer to us that know something about this. We live in western ky. if anyone could tell me which resources are good i will try and contact them.

I would contact the rhumetolgy department at children's hospital in Cincinnati. Dr Esi Morgan De-Witt at childrens 513-636-4200 Hope this may help

jenpitt15, I have a 9 year old boy. He was diagnosed with MW last fall. He started the Ilaris this last January. He is not sympton free, but we have noticed a defenite improvement in many areas. His teacher has even noticed. If you're open to it, I would love to talk with you and compare a bit with the similarities in age and everything. I talked with NOMID alliance a few months back and that was very helpful. I also received some information from them which was a great help. We see a rheumatologist at Children's in Columbus Ohio. If interested, you can contact me by phone or email. Chris Hall 740-927-4077 gbacre9@columbus.rr.com

Dear All, Thanks for all these posts! Sorry I was out of touch for a bit post surgery a few weeks ago and missed the start of this comment thread. My name is Karen Durrant and I run The NOMID Alliance, and have contact with patients in Australia and also Kentucky that have MWS or other forms of CAPS. There are patients on both sides of Australia that I know of that are seeing doctors, and I know some people in KY that see doctors there and also at Vanderbilt that I can connect you with privately if you email or call me. Feel free to call me ( I live in California) at 415-831-8782 or email me at sfokaren2003@yahoo.com or through our website at nomidalliance.net at site_manager@nomidalliance.net and we can talk about various options for doctors. My middle son also has NOMID, a form of CAPS and is now on Ilaris at a high dose of 8 mg/kg every 6 weeks and is symptom free! At the lower doses he had some breakthrough flares and inflammation pop up, but he is now doing great. He was on anakinra for 4.5 years before going on the Ilaris ,and was on 3 mg.kg a day of anakinra to cover his needs and that drug also worked well. Chris and Jen thanks for the kind words about the NOMID Alliance, and I am glad we were helpful! Chris, it sounds like your boy may need a higher dose of the Ilaris. Call me and we can talk. Some doctors are hesitant to make changes too soon, but it can take a few months and adjustments of the dose to get to being very stable on the Ilaris, but it is possible! In addition, the site rarediseasecommunities.org has a CAPS area with more patients posting, and some are also from Australia if you would like to connect on that group too. Thanks, Karen Durrant

Tarah, I wanted to connect you with some options for you for Kentucky. Contact me 415-831-8782 and we can talk about some doctors in your area, and also if you want to connect with others with MWS in your area too. MWS is a form of Cryopyrin-Associated Periodic Syndrome (CAPS) and FCAS, MWS and NOMID are all forms of CAPS, but FCAS patients do not usually have permanent damage due to the chronic inflammation from CAPS (genetic mutations cause an over-production of Il-1 in the body, leading to symptoms.) MWS patients can have some damage in their body, such as progressive hearing loss, or a buildup of amyloid in the body, and NOMMID patients can have the most permanent damage due to chronic inflammation, and can have brain pressure, hearing loss, pressure on the optic nerve, joint damage, and much more. There can be a crossover of symptoms between these conditions, but they share some common symptoms. We have a CAPS medical guidebook on our website that may help you to better understand the differences and similarities with these condtions, and we have a lot of info on the nomidalliance.net website too, and also about some other conditions. http://www.nomidalliance.net/downloads/finalCAPSbrochure_web.pdf I hope this helps! Karen

Karen Glad you are feeling better. Have some great news to share. Lisa www.stopcaidnow.com

If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com

@Karen, thanks for the info. I could not read some of it due to listings of members,invite box, etc. i couldn't figure out how to remove these from page so alot of it was covered by them.I have told Lisa that Jerrod has appt. the first of March with Dr. Graham at children's hospital at vanderbilt. This was were MWS was first mentioned to us.At that time they did no testing to confirm. NIH confirmed dx later. Dr. Graham volunterred to see him and assured me they know alot more about MWS than they use to. We will see. I will be lettting them know about sites you all have. Do you and Lisa work together or just for the same cause. She is at stopcaidnow and you nomid alliance, correct?? Thanks again, the more resources available the better of my baby boy will be. Thanks to all for dedication and commitment!! Tara

Tarah, Page 2 seems to get messed up on this rareshare. Feel free to call me 415-831-8782 if you want to talk, or want to connect with the other family that goes to Vanderbilt. She is not on this forum, but would love to connect with you. The NOMID Alliance and StopCAIDNow are separate organizations, but we are both working to help patients with autoinflammatory diseases. The NOMID Alliance started with mostly helping patients with CAPS, but we have expanded our scope in the last few years, and have been doing more outreach and support for other autoinflammatory diseases. Lisa and I have recently connected, and plan to work together on some projects. Lisa started in the last year with her org. and has been developing some exciting projects to increase awareness about autoinflammatory diseases. She has a child with Blau, but is working to help all autoinflammatory diseases. The NOMID Alliance use patient stories (identity protected) for letter campaigns to government agencies, drug companies, and awareness projects to improve patient access to medications and care. We are currently seeking patient stories involving patients having trouble with getting coverage for the necessary medications for CAPS or other autoinflammatory diseases for a very important project that will help patients greatly to have a better chance of getting the medications that they need. Another dear friend that runs nomidsyndrome.com has been collecting patient stories for years, along with photos, and we have a direct link to their site. They started in 2000, and have mostly CAPS stories. They are working on updating the site now. We do not feel the need to replicate something that they have already done so well, and prefer to collaborate. It is worth a look. We have been very involved with the content and patient support on rarediseasecommunites.org which is a wonderful online community that is growing. We are trying to help the CAPS and FMF communities to grow, and have also pointed patients towards some other online support groups. (rarediseasecommunities is moderated and sponsored by NORD and EURODIS-the big rare diseases orgs) The NOMID Alliance was started in 2006 as a 501c3 non-profit in the US, but we help patients worldwide.. We began with increasing awareness about CAPS, and also other autoinflammatory syndromes, but have done the most for CAPS awareness. We are very involved worldwide in patient advocacy, awareness, connecting people to specialists, clinical trials, or each other. We are also a leading resource for medical professionals. We help lots of patients,plus many doctors and other medical professionals every year. We also have been at medical conferences in the US and worldwide to increase awareness for these conditions, and inform specialists of our services for patients. We also have published a CAPS guidebook, and it is now going to be available in Spanish. Our new website will launch next month, and it will have expanded information and resources about many autoinflammatory diseases, medical resources, and ways for patients to connect. It will also be in Spanish and French to help more patients learn about these diseases. The website will have some patient artwork and quotes that will show how their lives have changed after the proper diagnosis, care and treatment for their disease. these are messages of hope, with some touching artwork (by children with these diseases) to those still at the start of this process with getting answers. I hope that info helps. We enjoy working with various organizations to help towards the same goal, and I invite you to explore these other sites to connect with more patients too. There is also http://health.groups.yahoo.com/group/nomidsyndrome/ that is an active forum for CAPS patients, but most are parents of a child with CAPS, or other similar conditions. There are some that have children that have variant forms of CAPS, or an overlap of more than one autoinflammatory disease on the group, and people are very welcoming and helpful. Best wishes, Karen Durrant

WOW! How wonderful for you to be a part of this. That means so much to those of us who would love to help but don't know how. Back when jerrod was diagnosed, we felt like we were the only ones who had ever been dx. Along with feeling alone we had no idea what we faced and i kid you not the doctors thought I was crazy!! I had Jerrod in gthe ER all the time, either for pain or what sounded like he had the "whooping cough"(not sure if spelled right). The breathing problems were mainly at night but the limping and rashes were constant. Even though the dr's finally saw him limp they continued to say "growing pains." I was furious because I knew better. Guess what I am trying to say is I am soooo thankful for people like you. I will be giving you a call and would love to connect with others, the more knowledge I have the better prepared I will be. Again thanks from bottom of my heart, Lisa too!! Tarah

Tarah, You are not alone! So many other parents have had the same treatment by doctors, and that is why we decided to try to do something about it. None of us ever had run an non-profit (I am a pediatric RN so I got the medical side, but had a huge learning curve on the business end!) Please do call, and I hope that we can get you connected with some other families in your area. I am glad that we have met on this forum, and I look forward to talking to you. Karen

Thanks for your email Tara, and I hear YOU! Hope Jerrod is having a quiet day. Talk soon.

Hi Creichman. I was diagnosed with CAPs in my mid 40s. Originally thought to be MW, because of inconsistencies, they now refer to it as a 'bizarre' variant CAPs and I am treated using Canukinabab. If you have any questions, please contact me. Alan

@KAREN, I really appreciate our conversation and that you shared your knowledge with me. I did try and reach Jennifer at number you gave me and i left her a message. It was later this evening. crazy day 2 of my 3 kiddos were home sick. well jerrod,bless his heart has poison ivy so bad his eyes closed shut, he is misearable, joints real bad, especially knees, just not good today and it was a lil later when i called her. I travel to lousiville tomorrow so my baby(colby) can get his first post op visit since cochlear implant. So if you hear from jennifer please let her know i will try again in a couple days when i get back to town. tara

Tarah, I hope that he feels better soon! Has he started the medications? I have been thinking of you all too, but my little one got really sick again this weekend, after having my older ones sick too off and on last week, so I have gotten behind on so many things! Jennifer is out of town this week, but will try to connect with you later. It sounds like you have a lot going on too! I have to work tonight and tomorrow for my part-time RN job, but will be back onto more NOMID Alliance work for the rest of the week. I will try to call you at the end of the week. I hope things get better, and go well for your little one with the cochlear implant. That is so exciting that he could get it. Karen

Karen, Strange that i just got on here and saw your post. Yes we have been extrememly busy. Lil man, Colby, has been released by his sugeon and only call if we want to do other ear. He is wonderful. Jerrod has started Kineret and I haven't notice te rash and swelling. We have had problems getting it the same time so I am going to take it to school and let nurse give it, plus it's a huge battle each night. His energy level, however, is not any better, could be time change too. He says he can't really tell he is even getting it cause he says he feels about the same. No injection site probl;ems and he totally prefers the hip so I have been alternating but I know eventually we'll hae to change sites. He hurt really bad last night in his legs but he also had a ballgame but only played 2 innings, who knows. He gets 100mg daily. I hope he starts feelin different soon. I was going to get in touch with you also but like you I had one home from school all last week, trip to Vandy and Louisville.We will talk soon. thanks for asking!! Tara

Hi I am in the UK and was diagnosed in my 40s as having Bizarre Variant CAPS Any help I can offer, please contact Alan

Dear Alan, Thanks so much! Your story on rarediseasecommunities.org about Variant CAPS is very helpful. In case anyone else wants to read it, please go to: http://www.rarediseasecommunities.org/en/community/caps/article/a-sudden-life-change I would like to talk to you sometime about this, as I am hearing from a few others with variant CAPS, and some people that are adults that are being looked at to see if they have this form of CAPS too. I know that we had some conversations after the House episode months ago, and shared your story with Dr Hoffman and others, as it is very unique. I will try to send you a message through rarediseasecommunities too so we can connect. I have only heard of a few cases in the medical literature in the past year with variant CAPS, but there are more being found. I hope that your medications are helping you, and appreciate your interest in helping the cause. You can also email me at site_manager@nomidalliance.net or also through our website at www.nomidalliance.org or we can even have a skype call sometime if you like (durrantics is my skype phone.) If you do facebook, The NOMID Alliance has a page, and we also have a very active but private forum for CAPS patients at: http://www.facebook.com/groups/41019328476/ You can become a member and I will approve you if you request it. Best wishes, Karen Durrant

Dear Alan, Thanks so much! Your story on rarediseasecommunities.org about Variant CAPS is very helpful. In case anyone else wants to read it, please go to: http://www.rarediseasecommunities.org/en/community/caps/article/a-sudden-life-change I would like to talk to you sometime about this, as I am hearing from a few others with variant CAPS, and some people that are adults that are being looked at to see if they have this form of CAPS too. I know that we had some conversations after the House episode months ago, and shared your story with Dr Hoffman and others, as it is very unique. I will try to send you a message through rarediseasecommunities too so we can connect. I have only heard of a few cases in the medical literature in the past year with variant CAPS, but there are more being found. I hope that your medications are helping you, and appreciate your interest in helping the cause. You can also email me at site_manager@nomidalliance.net or also through our website at www.nomidalliance.org or we can even have a skype call sometime if you like (durrantics is my skype phone.) If you do facebook, The NOMID Alliance has a page, and we also have a very active but private forum for CAPS patients at: http://www.facebook.com/groups/41019328476/ You can become a member and I will approve you if you request it. Best wishes, Karen Durrant