Sources
The information on this page is drawn from clinical
studies and from EF patients posting online. Links in UPPERCASE are to statistics compiled from the online postings of several hundred patients diagnosed with EF.
Medication
Recent studies recommend high dose intravenous methylprednisolone (Solumedrol) at the outset of treatment, followed by a corticosteroid drug such as prednisone which brings immediate relief from some symptoms
[Lebeaux]. Patients treated at the Mayo Clinic were prescribed prednisone (usually 60mg) and methotrexate, while about half received mycophenolate mofetil (Cellcept). A summary of treatment is on
Medscape. Time to
DIAGNOSIS has some effect on outcomes and so do the patient’s general state of health and proactivity:
TREATMENTS. Some EF patients who take longer to recover have other conditions that limit their treatment choices. The
drugs page shows the drugs being prescribed for EF patients in descending frequency. Patients posting online show which
DRUGS were prescribed the most and which treatments they
CREDIT the most. A clearer picture can be seen in the relative
SCORES given by patients. There have been no double-blind placebo-controlled trials to verify any drug or treatment. This makes it easier for speculative treatments to be credited, but it is not safe to generalize from single cases. Many studies note that
spontaneous recovery can occur without any treatment.
Physiotherapy
EF studies stress the importance of physical therapy
[63 patients] for the joint contractures. Patients who had physical therapy were very positive about its benefits. It helps if the doctor talks to the therapist to explain what is needed, especially if lymphatic drainage is involved.
Exercise
The statistics obtained from EF patients’ postings clearly show the benefits of daily exercises in speeding up our recovery from this debilitating disease. Some have found that aquatic therapy (exercises in a heated pool) were especially helpful.
Lymphatic drainage
There are different techniques but the objective is the same. Light pressure is applied to the skin in sweeping brush strokes that coax the accumulated lymph fluid towards the lymph nodes. At the end of each session we may notice a softening in the areas that have been treated. Details here:
healthline
Myofascial release
This is a more firmly applied massage that aims to improve circulation and stimulate the muscles. From the online postings it appears that it is the patients who choose this type of massage rather than their doctor. The ones who have had it are generally positive.
Diet
It seems intuitive that diet has a role to play alongside medications and supplements but the EF studies hardly mention it. Some EF patients go vegetarian, vegan, gluten-free, avoid pork, sugar, salt, sodium and so on. There are many EF patients saying it makes them feel better and reduces their EF symptoms.
Remission
Patients and doctors have different ideas about what it means to be in remission. For doctors it may be when the symptoms stop getting worse. Patients are inclined to say remission is when the disease has gone away and they no longer need treatment. A useful compromise is to measure it by how physically recovered we are. This is when we can do most things unaided and already feel a whole lot better, even if we are still receiving treatment. Some patients have a long history with one or more relapses, the different patient histories are summarized here:
PROGRESS.
Causes
There seems to be no consensus as to what causes this disease. Studies say “the underlying aetiology is unknown”. Some triggers have been suggested including insect bite, bacterial infection, or an unusual bout of exercise preceding the onset of symptoms. But if the triggers are so common why is this disease so rare? It seems likely there is a genetic predisposition because many EF patients have a history of auto-immune diseases in their family. There are examples of members of the same family being diagnosed with EF where there was no obvious common trigger. Here are some examples from the published literature and from what EF patients have posted online:
Eosinophilic Fasciitis in Families
Eosinophilia-myalgia syndrome
An outbreak of Eosinophilia-myalgia syndrome (EMS), was attributed to adulterated cooking oil in Spain in 1981. It was known as “Toxic Oil Syndrome”. A separate outbreak in New Mexico, USA, 1989
[Medscape] was linked to the ingestion of a contaminated batch of L-tryptophan (a dietary supplement). However the FDA lifted its ban on L-tryptophan products in 2005 with no further outbreaks of EMS attributed to it. This seems to confirm that
Eosinophilic fasciitis is not associated with L-tryptophan use.
[updated: 2025-03-18]