Needing to take control of how psoriasis affects me:
Psoriasis diary
After having felt I’d been subjected to gaslighting I decided to use my daily diary as tool to inform my current Dr & Rheumatologist of my current, as well implicit historical, journey with psoriasis.
Below is a précis of my diary entries.
Subject: My Psoriatic Arthritis & Psoriasis Experiences Over The Last Six Months.
Author: David Stuart Jones
Dated: Novermber 2023.
For the last six months I have been keeping a diary of my psoriatic arthritis [PsA] & psoriasis [Pso], as trying to recall & précis what is manifesting, when, at what rate & it’s impact, is challenging during sessions with doctors due to ‘brain fog’ caused by the disease & biologics or biosimilars. This document is a precis of my experinces.
Feet: toenails deformed & cracking, mainly on the left foot & typically the big toe. [Pso]
Ankles: Every three to five weeks the left ankle is very painful & ‘locks up’, typically following a inadvertent knock or tripping over something.
Heels: Every three to four week either the left or the right heel [calcaneus] becomes very sensitive [causes sleepless nights]. It typically last four to five days. [PsA]
Knees: The right knee swells up every two to three months and stays that way for a number of months, typically two to three. My bed is raised seventy millimetres to aid blood return as my lower right leg was swelling up. [PsA]
Hips & Sacroiliac joint: Consistent pain in varying levels, also emanating to the right hip. [PsA]
Hands: The fingers on the left hand are continuing to turn in, the joints on both hands ache from time to time. [PsA]
Shoulder: The left shoulder aches cyclically for about a week every two to three weeks. This has been the case for last seven years. [PsA]
Urethra: Sharp pain, similar to that of my worse case scalp psoriasis, typically in the afternoon when urinating. Pain the urethra if I sit for an extended period e.g. thirty minutes. This has been part of my ongoing genital psoriasis for over five decades. [Pso]
Rectum: Pain very similar to that of my worst case scalp psoriasis, occurs every week or so for two to three days. Similar life cycle to the manifestation described in my urethra. [Pso]
Stomach: Dull, vacant feeling, sometimes having a ‘corkscrew’ sensation, lasts for two to three days, occurs every two to three weeks. This has been manifesting in this manner for five decades, specialists undertaking endoscopy gave me a clean bill of health. Nothing obvious, noting psoriasis is typically cyclic. [Pso]
Throat & mouth: Small layers of skin in and around my tongue, worst case waking up with ‘larger’ pieces in my mouth. Cyclic, every two to three months for two to three days. [Pso]
Eyes: Dry itchy sensation in my eyes, started approximately two decades ago, simple eye drop ease the pain, occurs every two to three weeks, lasts for two to three days. I wear glasses, Optometrists cannot find anything amiss. [Pso]
Ears: Outer left ear has ongoing dry, scaly skin typical psoriasis manifestation, it’s been active for two decades, it tends to move around the outer ear. [Pso]
Scalp: Dry raised patches on my scalp, sometimes, every six to eight months, it manifests as red, raised inflamed patches with white or red centres, six to eleven millimeters in diameter, which are painful in the extreme. Sleeping is very challenging, hair cuts at hairdressers is not at all feasible. Cortisone based treatment typically fail to ease or diminish this form of Pso: [Pso]
Current Pso - PsA drug management regime:
[1] Methotrexate, twenty milligrams tablets, weekly, followed next day by folic acid five milligrams.
[2] Taltz, eighty milligrams once a month.
[3] Tapentadol two hundred milligrams sustained release, twice daily.
[4] Tapentadol fifty milligrams immediate release, as pain levels dictate.
[5] Mersyndol adjunct pain management, as pain levels & psoriasis manifestion - impact dictate.
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