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Muckle-Wells Syndrome

What is Muckle-Wells Syndrome?

Muckle-Wells syndrome (MWS) is an hereditary autoinflammatory disease with periodic fevers caused by mutations in the NLRP3 gene. It is considered a cryopyrin-associated syndrome (CAPS), together with other hereditary periodic fever syndromes caused by mutations in the same gene: familial cold autoinflammatory syndrome (FACS) and neonatal-onset multisystem inflammatory disease (NOMID, also known as chronic infantile neurologic cutaneous articular (CINCA) syndrome).

It is characterized by recurrent episodes of fever, skin rash and joint pain. Eventually patients with MWS can suffer progressive hearing loss and in some people amyloidosis. Amyloidosis is the deposition of abnormal protein, known as amyloid fibrils, in different organs and tissues of the body when there is chronic inflammation in blood. These amyloid fibrils can interfere with the function of the organ where they occur.

MWS is inherited in an autosomal-dominant manner, meaning that a single copy of the abnormal gene is enough to cause the disease. The defective gene can be inherited from either parent or can occur as a new sporadic mutation for an unknown cause. The risk of passing the altered gene to offspring is 50% for each pregnancy. It affects equally males and females.



  • Muckle-Wells syndrome
  • Urticaria-deafness-amyloidosis syndrome
  • Familial amyloid nephropathy with urticaria and deafness

Muckle-Wells syndrome (MWS) is an hereditary autoinflammatory disease with periodic fevers caused by mutations in the NLRP3 gene. It is considered a cryopyrin-associated syndrome (CAPS), together with other hereditary periodic fever syndromes caused by mutations in the same gene: familial cold autoinflammatory syndrome (FACS) and neonatal-onset multisystem inflammatory disease (NOMID, also known as chronic infantile neurologic cutaneous articular (CINCA) syndrome).

It is characterized by recurrent episodes of fever, skin rash and joint pain. Eventually patients with MWS can suffer progressive hearing loss and in some people amyloidosis. Amyloidosis is the deposition of abnormal protein, known as amyloid fibrils, in different organs and tissues of the body when there is chronic inflammation in blood. These amyloid fibrils can interfere with the function of the organ where they occur.

MWS is inherited in an autosomal-dominant manner, meaning that a single copy of the abnormal gene is enough to cause the disease. The defective gene can be inherited from either parent or can occur as a new sporadic mutation for an unknown cause. The risk of passing the altered gene to offspring is 50% for each pregnancy. It affects equally males and females.

Rareshare would like to acknowledge Dr. Tu-Anh Tran, Department of Pedriatics, Nîmes University Hospital for reviewing this content.

The prevalence of Muckle-Wells syndrome is not known but the prevalence (proportion of the population that suffer from a condition in a given period of time) of CAPS as a whole has been estimated at 1/360,000.

Name Abbreviation
Muckle-Wells syndrome MWS
Urticaria-deafness-amyloidosis syndrome UDA syndrome
Familial amyloid nephropathy with urticaria and deafness MWS

Muckle-Wells syndrome is caused by alterations in the NLRP3 gene, also called CIAS1. The NLRP3 gene serves as the blueprint for the production of a protein called cryopyrin. Cryopyrin is a piece of a protein complex known as the inflammasome; the function of this complex is to produce and release interleukin-1 (IL-1) to initiate the process of inflammation. The inflammation process is necessary to fight microbial attacks and help in tissue repair. The IL-1 molecules released attract white blood cells and other immune cells to the site of injury or attack.

The alterations in the NLRP3 gene that cause MWS lead to the production of an hyperactive cryopyrin protein. This, in turn, causes an excessive release of IL-1 causing an uncontrollable inflammatory response. The overreactive inflammation is what causes the fever and the other symptoms of the disease.

Symptoms start to appear in the infancy or early childhood. The most common symptoms are episodes of fever and skin rashes. Joint pain and conjunctivitis (redness of the eyes caused by the inflammation of the conjunctiva, the outer most layer of the eye) and fatigue are also common.

Approximately two thirds of the people diagnosed with MWS will eventually develop hearing loss, usually in the late childhood. The hearing loss is caused by the inflammation of the inner ear.

Some individuals with MWS can develop amyloidosis, the deposition of abnormal protein called amyloid. Usually, these deposits occur in the kidney and might cause progressive kidney damage, but they might also occur in and damage other organs.

Name Description
Hearing loss Hearing loss
Joint pain Joint pain
Fatigue Fatigue
Recurrent urticaria Recurrent urticaria (hives)
Fever Fever

When a Muckle-Wells syndrome diagnosis is suspected because of the presence of the characteristic symptoms, a genetic analysis of the NLRP3 gene can help confirm the diagnosis. It should be kept in mind that a negative genetic test does not exclude a MWS diagnosis.

Genetic testing for alterations in the NLRP3 gene.

There has been a significant improvement in the management of the disease symptoms with the introduction of drugs that block the excess of IL-1 in MWS patients. Those include Anakinra (Kineret®), Rilonacept (Arcalyst®) and Canakinumab (Ilaris®). Treatment with IL-1 inhibitors should be started as early as possible to prevent irreversible organ damage.

Individuals with Muckle-Wells syndrome have a normal life expectancy, unless they develop amyloidosis. The symptoms of the disease might affect the quality of life, but with anti-IL-1 treatments, the well-being of MWS patients has improved drastically in both controlling the symptoms and preventing the development of amyloidosis.

Autoinflammatory Alliance -

Garg S, Prahald S. Hereditary Periodic Fever Syndromes. Emedicine. Avaiable at:

Muckle-Wells syndrome. The National Orgnaization for Rare Disorders. Available at:

Muckle-Wells syndrome. Genetics Home Reference. Available at:

Sag, E., et al. (2017). "Autoinflammatory Diseases with Periodic Fevers." Curr Rheumatol Rep 19(7): 41.


Is this site active? I have so many questions! Created by Sali Bitar
Last updated 12 Aug 2020, 09:09 PM

Posted by Sali Bitar
12 Aug 2020, 09:09 PM


is this site active? I think I might have been wrongly diagnosed and actually have MWS. But doesn't seem like anyone is using this page..

FMF or MWS? Created by gigimarie
Last updated 3 Jan 2019, 08:58 AM

Posted by gigimarie
3 Jan 2019, 08:58 AM

My daughter was diagnosed with Familial Mediterranean Fever at the age of 2 years after having recurrent fevers, joint pain, stomach pain, etc. She was put on colchicine as a test and her flares decreased in frequency by enough that they were certain she had FMF. My husband and I had genetic testing awhile back but they just recently released information on FMF and neither of us has a variant detected. While there are many variants they don't know about yet, it makes me wonder if she has a different periodic fever disorder. Her doctor has ruled out PFAPA. When looking through the periodic fever symptoms, MWS caught my attention because of hearing loss. My daughter started showing some hearing loss at 3 years but they told me not to be concerned. It has progressed and I am taking her to see her pediatrician and rheumatologist asap. Any info would be helpful, as I am not finding much on MWS online, especially in regards to children. 

Hoping to make a difference in rare disease research Created by 123Genetix
Last updated 16 Aug 2017, 08:52 PM

Posted by 123Genetix
16 Aug 2017, 08:52 PM

123Genetix is a new not-for-profit organization created to advance rare disease research with our predictive computer modeling technology. Our computer models are easily customizable by the investigator and have a number of important applications. They are designed for hypothesis generation, research and experimental planning, grant writing and identification of potential biomarkers. We are looking to make a difference in the world of rare disease research and plan on having some exciting announcements in the coming months. But we need to get the word out and raise awareness about our organization. If you wish to help us, please follow 123Genetix on Facebook or Twitter and/or join our email news list via the simple sign up on our website at
Thank you for your time.

Any suggestions for doctors? Created by mabuzd
Last updated 4 Aug 2017, 02:49 PM

Posted by Angelina Episcopo
4 Aug 2017, 02:49 PM

New to this board and I see this post is over a year ago but did you get any help for your son? I wasn't diagnosed with MWS until I was 27 but there is help out there! I see Dr. Lawrence Schwartz in Virginia at MCV VCU 

Posted by Altakitty
25 Jul 2016, 05:40 AM

I went to Dr J Hausmann at the Auto Inflammatory Clinic at Beth Israel Deaconess Medical Center in Boston.

Posted by mabuzd
2 Jun 2016, 05:45 AM

Dear colleagues, I'm searching for a doctor or a place for my son who has the MWS Any recommendations ?

new CAPS/MWS dx- many questions Created by lindseyod
Last updated 4 Dec 2013, 07:16 AM

Posted by nomidalliance
4 Dec 2013, 07:16 AM

Dear Lindsey, I know Dr Hoffman very well and he would be a good choice to see. He is one of our medical advisors, and he is excellent. Will your doctors do genetic testing for other autoinflammatory diseases? I think that this would be very helpful. I am sorry to hear that the ilaris is not helping her. If you are on facebook, I would like to invite you to join our private patient group for autoinflammatory diseases at: There are hundreds of patients there, and it would be a great place for support, since many have other autoinflammatory diseases besides CAPS. Good luck! Karen

Posted by lindseyod
3 Dec 2013, 06:11 AM

Hi karen, Thanks for all the info, her CRP is consistently elevated so we are watching that, she also has protein in her urine pretty much all the time. We just did more blood work for IdG and urine for MVK testing. She has had 2 dose of Ilaris and has had episodes after each, the first was 2 weeks after the injection and the other only 4 days, they do not think its related to the medication but are concerned that the ilaris doesn't seem to be effective. Since she is talking more she's able to tell us her mouth, knee joints and stomach all hurt.I know the dr we saw in Seattle said that the Ilaris could be used a diagnostic tool, and so far it seems that its not supporting our current diagnosis of MWS. Sometimes i think its PFAPA but i'm not sure.. Has anyone worked with Dr Hal Hoffman? We think we might be moving from Kodiak to San Diego and are told we should see him.

Posted by nomidalliance
23 Aug 2013, 08:14 PM

Welcome LIndsey, I had posted but used a mobile device a few days ago, but it must not have actually posted! Sorry for that. There is another family in AK that has a child with CAPS, but they are near Anchorage. I can find out where they are going for care for you. There are patients that can have CAPS, but do not have the mutation found on the standard genetic testing for this disease. There are some new ways to test for somatic mosaicism for mutations for CAPS, but this is a specialized testing program that is done at the NIH, and a few other research centers worldwide. More info is on our website at: We have a helpful comparative chart of autoinflammatory diseases too: Vomiting with flares happens with a number of autoinflammatory diseases, and also there are some that have this that have CAPS too. On another note, your child's "clock work" flares may fit with some other conditions, and PFAPA does involve elevations of Il-1 beta. Here is an article to read about it: Does your child have chronic elevations of the CRP, ESR and other labs, or are they only elevated during flares? Has your child been tested for HIDS too? Take a look at the link for the comparative chart. We have a private patient group for autoinflammatory diseases at: that you may be interested in joining. We also have a CAPS only group too, but many are in both groups. also has a great CAPS community that we help to moderate too. Ilaris may help, but if you are not certain it is CAPS, it may be hard to get it approved with your insurance. Feel free to contact me at as well. Best regards, Karen Durrant

View Full Thread (1 more posts)
Symptoms? Created by Mayo
Last updated 3 Jul 2013, 04:35 AM

Posted by nomidalliance
3 Jul 2013, 04:35 AM

Dear Mayo, I would suggest that you look at the various websites for these medications to read the full prescribing info for each one. Ilaris and Arcalyst are FDA approved for patients with the FCAS and MWS forms of CAPS, and anakinra is approved in the US for the NOMID form of CAPS. Anakinra was first approved for Rheumatoid Arthritis around 2001. Arcalyst was FDA approved for MWS and FCAS by 2008, and Ilaris was first approved in late 2009. All drugs have to have many years of follow up and FDA reporting for any adverse events or significant issues with any medication. Also, I know that there are some ongoing registry follow up studies for Ilaris and there was one for arcalyst (it may still be going on.) Anakinra has been approved longer for RA, but was more recently approved for the NOMID form of CAPS in late December 2012. If you want to have the websites and more info, please take a look at our website where we have links to the various drug websites and prescribing info. I think that you may have also posted on the CAPS community at rareconnect,org so I will also share this there for you too. Let me know what we can do to help. Thanks, Karen Durrant

Posted by Mitch
2 Jul 2013, 07:59 PM

I do not know, but my son has had bi- monthly shots for 2 years now and he has remained well. He was sick (unrelated sickness) and missed his medicine and went 3 weeks over his due date. Within this 3 weeks his caps returned for the worst it has been since the medicine started. Long term affects, I have no idea. Fingers crossed, their will be none.

Posted by Mayo
1 Jul 2013, 09:31 PM

What are the side effects of the Muckle-Wells shots? How long have the shots been available? Are they tested for long term effects? Please help.

Possible MWS Created by blmielke
Last updated 29 Jan 2013, 07:59 PM

Posted by nomidalliance
29 Jan 2013, 07:59 PM

Thank you vstefans and blmielke! Sorry that I did not see this posting sooner. Thank you for contacting me by email Becca. This syndrome is considered very rare, with a chance of having a spontaneous mutation for CAPS at odds of 1:1 million! There are people that have inherited it from their parents, so there are some larger family groups with it. Once you have the gene mutation , it is a 50/50 chance that it will be passed on to your children. We have more info on our website and a downloadable CAPS guidebook, and other resources. I am mailing some to you Becca this week. Thanks, Karen

Posted by blmielke
24 Jan 2013, 01:15 AM

Thank you. I have been checking out the sites.

Posted by vstefans
24 Jan 2013, 12:48 AM

There is a lady in this community, KarenD (Durant) who has lots more information on NIH efforts and medications used for this. Have you been to yet? or Also, clinical trial is open - check that out at

View Full Thread (6 more posts)
3 yr. old son Created by griffin
Last updated 12 Jun 2012, 04:20 AM

Posted by griffin
12 Jun 2012, 04:20 AM

Hello everyone. So sorry for dropping off of the planet for awhile. Thank you for all of your thoughts and prayers. Right now I am trying to keep Jarin's Eosinophilic Gastro. Disease at bay so that it won't spur up the MWS infl. As for my 1 yr. old daughter she has been displaying a rash since about March 2012. So now she is having more symptoms along with the vomitting/GI issues. I emailed pics of her rash to Dr. Spalding and Dr. Zeft today at Clev. Zeft called me and told me that the rash on her bottom and back of legs look more blistered and not common with MWS...but the rash on the top of her thighs and top of legs do look more like MWS. I am going to continue to keep a log and if symptoms become more intense or worsen I am to take her in for him to evaluate. I have to say that for now things are somewhat stable. I'm focusing so much on the food and the wholefood supplements that we all three take daily. We just got back into our home due to mold remediation in the basement and myself, and the two kids had a fungus growing on our eardrums that needed to be scraped out. Not fun. Hopefully the mold spore count is lower and it will be a healthier environment for the kids. Just don't want the home to be spurring their inflammation when we are working so hard to keep it at bay. Thank you all so much for your help. Thank you Karen for your listening ear and eagerness to help when you all have your own battles you are tackling in your own homes. :)

Posted by momof2
6 Jun 2012, 02:28 AM

Hello Regina, We haven't heard from you in awhile. How are thing going????? I hope everything is so much better. My prayers are with you! Tina

Posted by nomidalliance
19 Apr 2012, 05:25 AM

Hello Regina and everyone, Getting the news of the mutation is a mixed bag of emotions for sure! You finally have a name and a diagnosis, but then again, you now know what is possible with this disease, and that is a hard thing to process. I think everyone will never forget the day when they get the news of the mutation! I still remember every bit about it for my son, where I was, what I was doing, and how I was up for many nights searching the internet for more info, and what could be done for him in early 2003. This was before they started the anakinra drug trials at the NIH, and when they were first seeing patients there with NOMID. Thanks to other parents that I found online, I was able to get my son into the NIH, and later the drug trials, but before that I was very worried for his future. I answered Regina on another post yesterday on rareshare, but yes, there are a number of others with the V200M mutation, and some have more symptoms than others. There are also people in the population that have this mutation and are not symptomatic, so it is complicated, but for those that have issues with CAPS symptoms, they do suffer with it, and the medications for CAPS can help. I noted from your other post that your son has some neurological issues as well, and those are not common to CAPS, but there is another family that I know with a different mutation that has a son with tourettes tics, and he also has asperger's. His mutation is a different variant CAPs mutation ,and the doctors are trying to sort out what is going on with him, but the tics they feel are not from CAPS. The family has thought that this issue has improved since he has gone onto medication for CAPS, which is interesting, but he is also on other meds to help this condition. Here is one article of a family with the V200m Mutation: Also this one: Give me a call and we can talk if you want. Medications targeting the over-production of Il-1 can help, and you may want to consider it if your children have more symptoms or signs of risk to their hearing or other issues. Healthy diet and nutrients will be good for overall health, especially if there are GI issues, but the Il-1 modifying drugs target the main issue with CAPs inflammation, which is the over-production of Il-1 from the mutation. However, since you have the V200M mutation, the doctors may be more willing to watch and wait a bit, if that is your choice. Best of luck, Karen

View Full Thread (23 more posts)
side effects of meds?? Created by vstefans
Last updated 18 Apr 2012, 07:59 PM

Posted by nomidalliance
18 Apr 2012, 07:59 PM

I have not heard from any patients yet with increased muscle weakness from these medications, so you may want to call the patient assistance line for Ilaris 1-877-452-7471 to ask about this, and talk to your doctor too. There are patients that have had issues with lax muscles, or tendons in some cases of CAPS, which can be present throughout the body, but this has been noted more with patients that have more chronic inflammation, and were noted before going onto medications for CAPS. This can persist to some degree while on medications, but for some it improved. We also have a large CAPS community on facebook in a private group with almost 200 members it is private, but you can ask to join. I will ask the group this question and get back to you, but feel free to join and ask too, or ask on the CAPS group too. Thanks, Karen

Posted by vstefans
18 Apr 2012, 05:06 PM

currently, canakinumab had been on anakinra initially thanks!

Posted by nomidalliance
17 Apr 2012, 04:34 AM

I noted that you are a medical professional too. Send me an email, and I can help you find some information. Thanks, Karen Durrant

View Full Thread (2 more posts)
Community News Articles
Caps patient interview with ian stedman

CAPS—Patient Interview with Ian Stedman

Publication date: 1 Jul 2020

Community: Muckle-Wells Syndrome

Video Interview

We had the pleasure of speaking with Ian Stedman—a lawyer, a father of two, and a rare disease patient and advocate from Toronto. He has Muckle Wells Syndrome, which is a variant of Cryopyrin-Associated Periodic Syndrome, or CAPS. Ian speaks to his experience with the diagnoses, treatment, and general navigation of the health care system as a patient.

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Non-profit charity devoted to CAPS diseases


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My youngest son has been diagnosed with MWS and is on monthly ILARIS shots since November 2019.

123Genetix is an innovative not-for-profit organization created to advance rare disease research with our predictive computer modeling technology. We believe that rare should not mean forgotten. To...

My name is Angelina and I am from Virginia, U.S. I was born with chronic uticaria and throughout my childhood until I was 27 I suffered with this rare disease. Always in pain, symptoms were...

I am a 49 year old female living in Utah, who was recently diagnosed with MWS.
Digital Marketing Specialist, have a child "Yonos" who is infected with "MWS".


Egyptian but currently living in Saudi Arabia.
Calgarian, communicator, designer, geek, health care advocate & mom of 2 special needs kids. Fond of knitting, crochet, cats & coffee - lots of coffee.
Hi, I'm Sonia and I have muckle well syndrome. I am hoping to raise money for a personal goal and to help others with Muckle Well Syndrome.
Daughter recently dx with CAPS/ MWS
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daughter of a cousin of mine is - not yet clear - probable mws- patient.
I am 29 years old. I have a 3 yr. old son and a 3 month old daughter. My son just received his results from a panel of periodic fever syndromes and it showed positive for Muckle Wells Syndrome and...
I am a 32 yr old mother of 2 beautiful daughters they are 11 yrs and 9 yrs old.. I live in Greeneville, TN. and have many health problems! When I was born I became very sick so i've dealt with it...
I am from Russia. I am 16. I have a Muckle-Wells Syndrome since February this year. I don't get treatment because there isn't this medication in Russia. I need to go to America.
I am the President and Founder of StopCAIDnow,Inc. (, in process of becoming a 501 (3) non-profit dedicated to educate, awareness diverse genetic testing, genomics and...
my son is 15 and was diagnosed with muckle-wells syndrome as a toddler. his sypmtoms are coming back after years of only occasional flare ups. looking for anyone else goin thru this.
I am a mom of a 9 year old just diagnosed with muckle - wells. Looking for info.
Suffer from what is described as 'bizarre 'form of CAPS. Treated at Royal Free London
hi i have been diagnosed with MWS since 2008 but have had it since birth, i now go to the amaloid centre in the royal free london hospital every 8 weeks for an injection witch helps with my symtoms...
I am a 30 yr old single mom with 2 beautiful daughters Rae who is 8 and super healthy and a 4 yr old Ryen that I've just found out has Muckle-wells syndrome and I'm here just wondering if anyone...
Mom of a kid with high fevers of unknown origin. Thinking about using Alaris for possible Muckle-Wells.
Hola! soy Luciana, de Argentina y en Octubre de 2009 me diagnosticaron Sindrome de Muckle Wells. Estuve toda mi vida buscando una respuesta a mi malestar y sufrimiento, con una pérdida auditiva...
My daughter was positively diagnosed with Muckle Wells Syndrome.


My name is tanner and my girlfriend has muckle wells. I joined this so I can learn more about this so I can understand what she is dealing with. I also wanted to find more ways to support...


Autoimmune hearing loss (moderate to severe)


Autoimmune hives
Mum and engineer from Australia. Currently investigating possible Muckle Wells Sydnrome in the family.
I have Muckle Wells Syndrome and I am taking 50mg Anakinra daily, and I have been since 2004. I did take some test drugs by Novartis without much success. Anakinra has been the most successful...
My name is Rachel and I am a 23yr old female who was diagnosed with MWS about one year ago.
Just recently diagnosed with MWS at the NIH.
i am 36 yr old, and my entier famaly on my mothers side has muckle well syndrome... i my-self have reocuring rashes (my mother uwse to call them spots).....feavers sever joint pain,tumer in my...
I am a 19 year old and I was diagnosed with MWS about a year and a half ago. I am interested in sharing.
my daughter age 7 has muckle wells syndrome and has been treated for the last 2 years
Hi, my name is Lacey and I am the mother of a four yr old daughter whom was diagnosed with MWS about 2 1/2 yrs ago..what a journey so far.. I am looking for anyone to talk with who can relate!
I am the President and Founder of The NOMID Alliance, (, a 501 (c)(3) non-profit dedicated to improving awareness, care and treatment for patients with Cryopyrin-Associated...
I have muckle wells and so does my 12 yr old son and 13 yr old daughter we have had this disease since we were born.

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