Common Questions About Periodic Fever Syndromes and Other Autoinflammatory Diseases

Questions About Periodic Fever Syndromes These syndromes can be very confusing for family, friends, coworkers, teachers, and others to comprehend. This is understandable because some affected patients with certain periodic fever syndromes (autoinflammatory diseases) may have periods of near-perfect health between flares, may not have visible symptoms, and the symptoms mimic infectious diseases.

Here are some answers to common questions so you can better understand how someone you know is affected by their autoinflammatory disease.

Are any of the symptoms, such as fever, rash, or vomiting contagious?

No, these diseases and the symptoms are not in any way contagious. The symptoms, such as fever, rash, and/or joint pain, are a result of genetic mutations that cause an innate malfunction in the immune system. The person’s immune system is causing the symptoms, not a virus, bacteria, or other infectious agent. To learn more, click here.

So they will outgrow this, right?

For most, the answer is sadly, “No.” Most autoinflammatory diseases are lifelong conditions. The majority of these diseases start in infancy or early childhood, but a few patients, or a few diseases do not have symptoms until adulthood.  As these are caused by genetic mutations in most cases (or believed to be genetic, but the mutation(s) have not yet discovered), you cannot get rid of these syndromes from your body.

One exception to this is PFAPA.

Most children with PFAPA will outgrow it by their teens. Keep in mind that even though they may outgrow it, PFAPA is still a debilitating disease for children who suffer from it.

In some diseases, such as HIDS, the episodes of flares may be less frequent in adulthood.  Some patients with TRAPS, and a few other conditions like CRMO may have longer periods between flares.

But some patients with autoinflammatory diseases can have more frequent episodes or more severe symptoms as adults. The damaging effects of chronic inflammation that is involved in some systemic autoinflammatory diseases over decades can lead to debilitating, and damaging effects, depending on the disease, but this can include: secondary amyloidosis, hearing loss, joint damage, and more.

But they look healthy now – are these “real” diseases? 

These diseases are very real and recognized by leading medical professionals and researchers from all over the world. The person may not have visible symptoms, but the pain, fatigue, fever, and other symptoms are very real, and often very severe and debilitating. In addition, patients or families with a child with one of these diseases may not be out and about while during flares, so you may only be seeing them on their “good days.”

The common link with all of these syndromes is that the inflammatory process in the immune system is out of control. These means they can have severe inflammation anywhere in their body, from their skin and muscles to their vital organs.

In many of these conditions, especially the periodic fever syndromes PFAPA, FMF, TRAPS, and HIDS, patients may have periods that last days to weeks where they are healthy and mostly symptom free. However, when a flare starts, the symptoms can come on very quickly. Patients who were 100% fine a few hours ago may now be unable to get out of bed or function in their daily life.

Are they caused by the environment, diet, or lifestyle of the patient or parents?

No, these genetic mutations are not caused by any external factors. Likewise, diet or lifestyle cannot fix the mutation causing the symptoms. Many patients with certain autoinflammatory diseses realize that this disease has affected their family for generations.

Some patients may have gastrointestinal symptoms as part of their autoinflammatory disease and do find some relief with certain diets, but it does not cure them of their disease.

If you want to learn more about autoinflammatory diseases in general, please visit the Autoinflammatory Alliance website.

Learn more:

READ  My Child, or I Keep Getting Fevers. What Do I Do?
READ  List of General Autoinflammatory/Periodic Fever Syndrome Studies and References

*Top photo by stari/

More for You

About Karen Durrant RN

I am a Registered Nurse, President and Founder of the Autoinflammatory Alliance (formerly NOMID Alliance) and parent of three boys–one of whom has an autoinflammatory disease. It is my passion to help increase awareness about autoinflammatory diseases, and empower patients and medical professionals with information, materials and support to help them navigate the complex and challenging path towards diagnosis, and treatment of these rare diseases. In 2006, I founded The NOMID Alliance (now known as Autoinflammatory Alliance) to help increase awareness and improved care and treatments for patients with CAPS and other autoinflammatory diseases. It was the first, and only organization for all autoinflammatory diseases in the United States at the time. Our mission has always been to help patients of all ages with any of these diseases, and we have continued and refined our efforts with our recent name change to the Autoinflammatory Alliance. To help educate and increase more awareness, I co-authored the CAPS medical guidebook that was first published in English in 2008, and small comparative disease chart, and the 2012 version in English and Spanish. I am one of the main authors of the first Comparative Chart of Systemic Autoinflammatory Diseases that was was released with the poster presentation with a published abstract at the Autoinflammation 2013 ISSAID Congress in Lausanne, Switzerland. In addition, I have developed and edited our website since 2006, this blog (along with Jennifer Tousseau), and wallet-sized disease information cards for patients on various autoinflammatory diseases. I have worked in pediatrics for most of my nursing career, from emergency/trauma to research and instructing student nurses in various pediatric units in hospitals throughout the San Francisco Bay Area.


Common Questions About Periodic Fever Syndromes and Other Autoinflammatory Diseases — 12 Comments

  1. I believe my child is suffering from this. I don’t know exactly what and No Dr has diagnosed anything they always test for strep throat and its always negative . fevers reoccurring every 27-30 days like clock worm as high as 104. What do i need to ask for In order to diagnose something?

  2. Hello Juan,

    It’s best to discuss with your doctor your specific fever syndrome diagnosis and what treatments are most effective for that syndrome. You can search for studies on treatment for each specific syndrome to discuss with the doctor.


  3. Hi, I was just wondering what the best treatment for HIDS, am awaiting possible treatment with anakinra. Is this the best for HIDS
    Thanks you

  4. I’m awaiting to see a paediatric rheumatologist for a positive diagnosis of PFAPA for my 3 year old son. I have been asked to record everything in the meantime but I have a question regarding frequency of episodes. The whole household was sick with a mild gastro bug last week and my son seemed to take it harder than everyone else. He is due a fever episode this week but normally I notice a build up. Black ring usually appear under his eyes, he wakes frequently during the night with joint pain, goes off his food, gets tired and tells me “I feel slow mummy”. But he is not displaying anything. Is it possible that being so sick just before an episode that it could have reset his normal fever pattern?

    I’m also wondering if you know of any support group in Australia? Either Queensland or Tasmania as we will be moving there later next year.

    Thank you

  5. Baby is now 23 months old. Has been diagnosed with PFAPA
    She has been suffering since 6 months old. I have lost my job because of this. Iam in complete meltdown myself . My poor baby has to endure such pain and misery and it is breaking my heart. We just missed her cousins bday party.. yet sadly another event she can’t attend . Does anyone know if here is a form of disability a mother can apply for when she can not work . … Iam unable to hold a job when I have to take off a week every month for me to take of my baby. My husband and I are at loss for how to live with the catastrophic ,debilitating disease that affects the whole family . I have to work to supplement our income … I feel like our friends have dissipated because we never can commit and when we do we can’t make it … people don’t have a clue of what this disease is about
    PS. we live in southern Calif. .
    PS. She has steroid for fever..that is he only medication they gave us at Children’s Hospital In Los Angeles where diagnosis was confirmed steroid after a year of various doctors and hospitalizations we finally got into CHosp.
    We did not have genetic testing done .we were unable to collect enough saliva from our baby tp proceed. .
    Thank you. Lee

Leave a Reply

Your email address will not be published. Required fields are marked *