My name is Sonya Feliciano. I’m 37 years old and I’ve suffered with psoriasis since around age 17. During the first few years, primary care physicians failed to diagnose me and pushed my skin condition off as eczema or allergies. It wasn’t until my early twenties that I saw a dermatologist and was diagnosed with plaque psoriasis. Diagnosed, but failed to fully explain what psoriasis was and the type of journey I was in for. Failed treatment after failed treatment for about five years, I lost my medical insurance and also my patience with every creams, solution, ointment, sprays and cortisone injection. Each worked, but were short lived and then my psoriasis would be back with a vengeance. I tried homeopathic remedies, these worked mildly during semi-remissions, but nothing touched a flare up.
Two years ago I decided to give another dermatologist a shot (no pun intended). At that time there was a new drug he was eager to try , but it was still awaiting approval, thanks to the insurance companies requiring step treatment we had time – I had to start with an oral biologic (as I’d already spent years using topical treatments, I was able to bypass repeating that process). I was informed the oral biologic had a 50/50 chance at successfully treating my psoriasis, after 6 months with zero change and horrible side effects, my dermatologist switched me to my first injectable biologic. Another six months went by, I began to show signs of improvement, but also great allergic reactions at the injection site. The reactions were so great, I told the doctor it wasn’t worth it. We waited a couple of months and the biologic I’m currently taking today became available –after 16 months I’m still experiencing side effect free, clear skin.
This past September, I had my 6 month lab work done. The dermatologist office called and informed me that my liver enzymes were elevated and I needed to make an appointment to see my primary care doctor. Clueless and panicked, I called my primary care doctor who had neither seen my lab work nor truly knew the treatment I was undergoing with the dermatologist. Over ten years later and again another communication breakdown – do they not understand that stress is a trigger? Two months went by with repeated attempts to contact my doctor for further instructions – why not just go to the office? I work full-time, 40 hours a week and am also a full-time student attending classes 20 hours a week (not to mention that those office visits cost you, even if it’s because the doctors can’t pick up a phone).
I printed off my labs myself to discover my ALT and AST were a few points higher than the range limits – a few points isn’t a huge deal, however; Out of range is just that, “out of range” this is our bodies way of telling us something is going on. Has this level been steadily increasing over the years’ time, but remained within normal range until now? One point above normal limits may not affect one patient, but can drastically affect another. My primary care doctor had zero clue what she was looking at or for, I informed her that nonalcoholic fatty liver disease is a risk to many psoriasis sufferers. “Well you’re only one of two points out of range, I wouldn’t have even called you.” Yes, but you see being active and having a challenged immune system means I need to be as proactive as I possibly can. At almost 40, I’m considering having children which is already a high risk issue and this is something that concerns me. “We usually don’t do anything until the numbers double or triple…”
Which to me translated into, “let’s wait until there’s a REAL problem, not just a concern.” The interesting thing here is, I have to have this blood work done routinely every six months for a reason– that means you can actively monitor fluctuations within my results. I understand being proactive and preventative in the medical world means money out of your pocket doc, but I’m only concerned about myself!
I shared this story and my frustration with you because as psoriasis patients we suffer miscommunication on so many levels: doctors with patients, doctors with pharmacy, patient with pharmacy, insurance company challenges and most of all DOCTORS with DOCTORS (which shouldn’t even be on this list). We have primary care doctors and specific specialists in hopes that these groups work as a team for our best interest – Am I asking too much?