Schnitzler syndrome

[MEPatient345]

This seems like something that could be misdiagnosed as ME/CFS. There is a treatment.

Her Various Symptoms Seemed Unrelated. Then One Doctor Put It All Together. https://nyti.ms/2BvxJfk

“In Schnitzler syndrome, according to current thinking, the most primitive part of the immune system — a type of white blood cell known as the macrophage — goes wild and instructs the body to act as if it is infected. The body responds with fever and chills, a loss of appetite, flulike body aches, hives and high levels of one specific type of antibody: IgM. Exactly why and how this occurs is still unknown.

The disorder was first described in 1972 by the French dermatologist Liliane Schnitzler, who subsequently identified five patients with hives, episodes of prolonged fever, bone pain and enlarged lymph nodes. These symptoms, plus an elevated level of IgM, Schnitzler proposed, defined a new disease.”

 

[Bob]

Thanks @Silencio. That's very interesting. It's a rare illness that sounds very much like ME. There are some symptoms that aren't typical of ME, such as a hives rash (but I think some of us get hives). It also sounds very much like MCAS ( mast cell activation syndrome ), which a number of us seem to have.

Interestingly, Schnitzler Syndrome is a result of activated macrophages, which is one of the theories of ME. (I've always though it was an interesting theory.)

The article doesn't mention the name of the drug treatment that the patient was successfully treated with, but a wikipedia page has information about the most effective treatment, which is called "anakinra". ( Perhaps this would be an interesting drug candidate to trial on ME patients? ) The Wikipedia article also mentions other digs that can be helpful.

Wikipedia: "Anakinra (brand name Kineret) is a drug used to treat rheumatoid arthritis.[1] It is an interleukin 1 (IL1) receptor antagonist. "

 

[HowToEscape?]

Superficially, it doesn’t sound like us, brain fog is not a primary indication for Schnitzler syndrome, no mention of Pam, no mention of disrupted sleep, no mention of sleeping during the day and inability to sleep through the night.

 

[MEPatient345]

They don’t talk about fatigue or malaise in the article although they are listed elsewhere as symptoms. She suffered from weakness and tiredness, which would be described in different ways by an ME patient, we have a learned vocabulary to talk about our disease.

The symptoms do not match my own, but I’ve talked to so many patients with other crazy symptoms like constant hunger, or vomiting, bone pain or large lymph nodes. Some ME patients that I have spoke to do not have brain fog at all. Some have abnormal igM and some don’t. We are such a heterogeneous population that it seems certain some people may have misdiagnoses or comorbid diagnoses. So, worth sharing for anyone who might recognize these symptoms in themselves. Since this is rare, most doctors may not find it. (And since it is rare, it’s also possible it’s not well defined, similarly to the bad definitions of our disease floating around)