On Remicade, my dd (18 yo at the time) developed severe psoraisis-like lesions on her scalp, she was told that it was impossible that it was psoraisis because she was on Remicade. These tenacious lesions required steroid injections and a variety of topical treatments to keep them controlled. However, as time went by, the dermatologist did a biopsy which was positive for psoraisis.
As far as the theory that psoraisis is a pre-existing condition, she did not have psoraisis prior to starting Remicade. It is virtually impossible that a female adolescent would not observe psoraisis!
On the family connection, I have heard that she has a first cousin with psoraisis, although I don't know if this diagnosis was made with a biopsy.
When she was 19 yo, my dd began Humira because she was experiencing flu-like symptoms on Remicade. The convenience of injectable Humira, was quickly offset by constant illness. Besides, the skin issues and the new development of skin infections, she was sick continually with a variety of infections of ear, nose and throat system. She had colds, sore throats, sinus infections, and ear infections. She was always plugged up and hypernasal and her nose often bled.
The ENT prescribed numerous antibiotics, steroid and antibiotic sprays, and sinus irrigations. She even tried staying on a maintenance dose of an antibiotic to head off infections. The ENT, who was experienced and a lecturer at the University of Toronto, was very frustrated with his lack of success. A CT scan showed no sinusitis, but the guck never stopped flowing. He even wondered if the susceptible tissue from her digestive system extended into her nose, commenting that it is hard to know where skin from the mouth ends, and skin in the nose begins. If the mouth is susceptible to ulceration, are parts of the nose also susceptible? Did the ulcers lead to opportunistic infection? We were to the point that we had to wonder if the ENT problems were worse than the CD.
Eventually the ENT placed tubes in her ears to drain the infections as she began to also experience hearing loss. Mercifully, she began to have some reprieve after the myringotomy. Five months later she stopped Humira, and she has not had any further infections of the ENT system whatsoever; not even a cold.
On Humira, in addition to the psoraisis, she developed many odd skin infections, had several biopsies for strange boils and lesions, and was plagued by wart colonies on her feet. From the beginning of the scalp psoraisis while on Remicade until 18 months post Humira, she had to see a dermatologist every 2 weeks to keep the infections, psoraisis, and wart colonies under control. Fortunately, she adores her dermatologist, who has been very kind to her, and likens her visits to a trip to the spa.
All the same, this is over 100 dermatologist appointments to manage and clean up the effects of anti-TNF therapies over 4 years!!! If you consider that each appointment involves about 2 hours of time (for preparation, driving, parking, waiting, treatment, and return trip), this is about 50 hours spent on skin appointments every year.
This doesn't include all the time spent on the application of various topical therapies, some of which require showering. Even if we imagine that these therapies take 15 minutes per day, this is about 8 hours a month, or approximately 100 hours per year.
Nor does it include all the trips to the pharmacy for the various therapies, some of which were special compounds. Let's imagine one dermatological trip to the pharmacy per month taking about one hour of time, or 12 hours per year.
This also doesn't include the time spent claiming pharmaceutical costs from secondary insurance. Let's imagine one hour per month (to find the receipt, make the claim, verify the insurance amount received, and post the cheque), or 12 hours per year.
Now let's do the math: 175 hours per year. In context, this is almost 5 weeks of work (based on a 35-hour work week). Over four years, this is 20 weeks spent working on normalizing skin. At a minimum wage of $10/hour, this has the value of CDN$7,000 before taxes.
Beyond the monetary costs and the opportunity costs (see above) it is hard to calculate the psycho-social costs of skin disease. It is tough for anyone, but I imagine it to be particularly difficult for a female in adolescence and early adulthood. Imagine being on constant alert for psoraitic lesions and skin infections, which you perceive will make you less pretty and desirable, or waiting for hair damaged by lesions to grow back in, hoping in the meantime, that bald spots can be well-enough hidden, or having to add a skin regime to the already numerous bowel therapies. It's all quite threatening and overwhelming.
"Severe skin lesions cause patients with inflammatory bowel disease to discontinue anti-tumor necrosis factor therapy" in Clin Gastroenterol Hepat (2010)
Background: "Psoriasiform and eczematiform lesions are associated with anti-tumor necrosis factor (TNF)-α therapies. We assessed clinical characteristics, risk factors, and outcomes of skin disease in patients with inflammatory bowel diseases that presented with psoriasiform and eczematiform lesions induced by anti-TNF-α agents."
Conclusions: "Inflammatory skin lesions following therapy with TNF-α inhibitors occurred most frequently among women and patients with a personal or familial history of inflammatory skin disease; lesions did not correlate with intestinal disease activity. Recurring and intense skin lesions caused 34% of patients in this study to discontinue use of anti-TNF-α agents."
NOTE: a full PDF version has been posted on IHaveUC, but I am unable to load all the pages; Read Adam's story and comments from others here.
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