Myself
This page describes my experience as an Eosinophilic Fasciitis patient. I am male, born in 1947 and was diagnosed in July 2014 with an MRI and biopsy. My symptoms were typical and my treatment was effective. I started treatment in August 2014 and finished in December 2016 by which time I had almost completely recovered. If anyone wants to contact me the email address is me@gmail.com with “me” replaced by “mogfitz”.
Symptoms started slowly then flared up
I was bothered by a numbness and tingling in my hands on awakening each morning. Then my feet and hands became swollen. Gradually the everyday things like getting dressed, washing, picking things up off the floor, opening jars and bottles, getting in and out of the car, all became harder. I went to the family doctor who sent me for physiotherapy. The physiotherapist noticed with each session that I was getting worse. By now I had most of the symptoms listed on the Symptoms page (bent arms, wooden skin, groove signs, peau d’orange, abnormal fatigue). I had also lost a lot of weight, my arms and legs were thin like sticks.
Pain
Some patients suffer a lot of pain [9]. Many complain of severe muscle cramps, for others it seems to be the fibrosis in their limbs causing them pain. I had no constant pain, only brief pain when I bumped into things.
My diagnosis
There were weeks of tests, scans and examinations. Blood tests, an ultrasound examination, computerized tomography (CT) scan and a magnetic resonance imaging (MRI) scan. It was the MRI scan on my left arm that showed, by now suspected, the signs of Eosinophilic Fasciitis. Next a biopsy, a deep slice right down to the muscle just above the elbow on my right arm. I also had a positron emission tomography (PET) scan and bone density scan which showed some osteoporosis.
My treatment
Prednisone 60mg daily, reducing each month. Plaquenil 400mg a day reducing to 200mg after 7 months. Weekly Methotrexate 20mg injections started a month after the Prednisone. Supplements: folic acid for the Methotrexate, magnesium for cramps, calcium+D3 for bones. Once a month Ibandronic acid to counter the effects of the Prednisone. Monthly IVIG (Intravenous Immunoglobulin) infusions over 15 months. The Methotrexate was stopped after 18 months, the Prednisone after 24 months, the Plaquenil after 28 months. The biggest improvement came within the first three months while on the highest medication, then more gradual while tapering down over the next two years.
I had weekly physiotherapy and lymphatic drainage. Daily exercises and once a week “aquagym” class. It seems best to build up the exercises gradually, not force it too quickly.
Each month I was examined to check physical progress (Rodnan skin score) and a blood test was taken and compared with previous results. I also kept my own logs to track drugs and progress:
Sample medication log
Sample progress log
My treatment finished at the end of 2016. I can do all the things I could before I got this illness, slightly less well and with less strength, but well enough.
[updated: 2021-11-14]