Experience

Palmoplantar pustulosis for 33 years

Palmoplantar pustulosis for 33 years/woman in her 60s

I noticed vesicular lesions with pain manifested on the sole of my left foot, but thought it was just skin rash or something. The lesions gradually spread to the sole of my right foot and over the entire soles of both feet. Pustules were observed, and the affected skin was thickened. Scaling became severe. I visited a dermatologist for the first time at the age of 36, and was diagnosed with palmoplantar pustulosis at that time.
I have been treated with oral drugs, topical drugs and injection drugs, but symptoms have been exacerbated. I was transferred to different hospitals. Since the symptoms did not improve, I even tried remedies such as Chinese herbal medicines on my own judgment.
Despite these treatments, skin eruptions were manifested on the palms of both hands. I was also presented with scabs on the whole scalp, and skin eruptions over the body. Hardened skin and pustules caused cracks in skin, and I felt a sharp pain while walking. It was like I was walking barefoot on many pushpins. It was hard even to get up, and take the first step. I was temporarily using a wheelchair for the pain, and was having difficulty in walking without a cane. Skin symptoms of the hands were also severe. Many pustules developed on the palms of the hands and inside finger nails, and there was almost no normal skin left.
Around that time, I visited a university hospital. Since the symptoms were so severe, it was considered to be impossible to carry out daily living activities. Therefore, I was hospitalized for about 3 months to receive in-hospital treatment. Treatment was initiated with oral and topical drugs, and phototherapy and tonsillectomy were performed. At the same university hospital, I underwent root canal treatment on several teeth. Although I patiently continued with the treatment, symptoms repeatedly improved and aggravated. When my previous attending physician was transferred to a distant hospital, I was referred to my current attending physician by my previous physician.
For almost 30 years, I only took shower even during winter. If I bathed in a tub, many scaly skins would float in the tub and make the surface of water almost invisible. When I drained water from the tub, scaly skins would clog up the drain. Therefore, it was troublesome to bathe in a tub.
Since I always had gloves on for 17 years, I did not touch anything with my bare hands. I had not washed my face or shampooed my hair with my bare hands.
The affected skin looked ugly, and people often assumed that it was contagious. As a result, I was feeling depressed and seeing a psychiatrist regularly.
Per recommendation of my attending physician, I participated in a clinical trial of biologic for 1 year and 8 months from the year 2015. Subsequently, most skin eruptions of the hands, feet and body disappeared.
I was able to go barefoot and bare hands, and was able to bathe in a tub for the first time in 30 years. I felt like I finally became a normal person again, and was truly happy.
Since use of this biologic was finally approved in Japan, many patients including myself will be saved.

Are you giving up seeing a physician because long term treatment hasn’t yielded a favorable outcome?
Are you giving up going outside for pain in the chest bone, pain of skin eruptions or poor appearance?
I would like to tell you “don’t give up, and visit a dermatologist”.
Field of medicine is constantly evolving.
I truly hope all dermatologists nationwide to work closely with patients and to provide us new and appropriate treatments as well as guidance.
We, the patients with palmoplantar pustulosis, are struggling with physical pain of the disease as well as emotional pain inflicted from prejudice.

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