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Adverse drug reactions; How important is a diagnosis?
Like many of you, I have had a long and confusing set of symptoms that were so unusual that doctors didn't seem to know what to make of it (an immunology specialist as well as a GP). I will attempt to keep my story and questions succinct:
The part that is clear: I had an adverse reaction to acetaminophen (=Tylenol, paracetamol, APAP) which resulted in a few patches (5 macules, 2 cm or less) on my normal skin (leg, hands), but mostly characterized (and most worrisome) by blistering: first on the palm of my hand (6 target spots, 1-1.5 cm, 3 became blood blisters within 24 hrs), the thin "skin" on my penis including part of the glans, and eventually (the second time, a month later, which is how I now know what caused it) blisters and erosions on my hard palate, and sores on my lips that felt like severe burns. The blisters on my penis and hard palate were larger (2cm or more) fluid-filled sacs (not taut) that burst within 24 hrs and left very raw underlying tissue exposed.
Earlier in the year/last winter, I had a few strange and unexplained health issues (three bouts of flu-like symptoms lasting 10 days each 1 month apart, Jan-Mar 2018); C-reactive protein was high; blood work and liver function were "off"/"unusual", but not indicative of anything specific; infections came back neg (flu, mono, heps A-C, HIV, blood and urine cultures). Not sure if that is related or a precursor to what happened more recently (Nov and Dec 2018) which was clearly an adverse drug reaction within 24 hours. In Nov, I got in to see immunology specialist on day 5 and started treatment (20 mg prednisone start, step down after 2 days) which resolved completely within 2 weeks. In Dec, did not get in to see PC for 7 days (weekend, New Year's), didn't start treatment for 10 days (50 mg prednisone, step down 10 mg each week for 5 weeks).
Yes, in retrospect, I know I should have gone to the ER, but because my vitals were normal, and I didn't know what was going on or how bad it was going to get, I figured they'd just tell me to go see my PC or dermatology. I also kept hope that by stopping the offending drug, the symptoms would get better on their own - which they did not. I'm now on week 3 of decreasing prednisone, and the symptoms have resolved for the most part, albeit more slowly this time. I have a follow up next week with dermatology and I want to be prepared.
Preliminary diagnosis is lichen planus (GP after consulting with dermatology), but from what I've learned, that does not seem like the best match. Other conditions which seem to be more of a match are erythema multiforme and/or Stevens-Johnson Syndrome. It's hard because a lot of these conditions seem to have generalized symptoms that are 50-75% present with "x" but some patients have no sign of symptom "x" and none of these conditions seem to be characterized by 100% present with "x". I don't want to get into a disagreement with my doctor - and I don't really know how important it is, given that the treatment seems to be the same no matter what it's called. I also understand that they went to medical school and I did not; but I also understand that they see many patients every day, day after day, and have 15 min to maybe an hour to focus on my health condition, but I have/had hours, days and weeks to try and figure out what the heck is/was going on with me and my body.
I can discuss my concern about my personal health (liver function, scarring, increased risk of cancer due to reaction) with my doctor, but what I'm trying to wrap my head around here is how important is the label? And do adverse drug reactions (ADR), severe cutaneous adverse reactions (SCAR), etc, get coupled with a second diagnosis of lichen plans, erythema multiforme, SJS, depending on how the reaction manifests through the skin (and/or internal organs)?
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I had my appt with the dermo last week and it was one of the worst dr's appts I've ever had. Seriously. I won't go into all the details, but in short, she glossed over the adverse drug reaction part, basically ignored any symptoms that I had had a month ago and only looked at where I was at now. Based on that, she wanted to put me on antiviral medication for herpes, which I did not want to do, primarily because I felt that was completely missing the mark (and she did nothing to connect them, if there was some relationship). Although she spent a fair amount of time with me, and allowed me to give a thorough history, in the end she kept saying "I don't know, we don't know, you don't know. You know?" I felt I had to be rude and stop her and ask her to listen to me and trust me when I described the initial symptoms and their onset - sorry if she didn't get to see it. And sorry if she didn't look at the pictures they too at primary care on day 10 of the outbreak, which did not show the blisters that were there on day 1-2. And later on in the appt, I realized that she had not truly heard me when I described my blisters. When I pressed her to describe the blisters she was talking about (in the event they, i.e. herpes in her mind, came back), and she got frustrated, like all blisters are the same. I thought to myself: "Oh my word. I have looked at so many pictures of blisters online, I now know that they are NOT all the same." She finally indicated with the tip of her finger and said "you know, small clusters..." I then reminded her that was NOT the kind of blisters I had. Mine were large, flaccid, fluid-filled blisters that resembled blisters from scalding, one of which hung down like a turkey wattle. To this, I could tell she was surprised and just said, "Oh. We'll add that to the notes." Ugh. I never want to go back to her. I'm tempted to go on, but would not be of use to others. And although I wanted to follow up with someone about the adverse drug reaction and my liver function, I didn't feel like I could accomplish that through her. I can't believe there aren't more physicians with an interest in or doing research in adverse drug reactions.
I had a routine dental cleaning scheduled mid-February. I had never thought about asking my dentist because the mouth was the last place symptoms appeared and I associated dentistry with the teeth, not so much the soft tissue of the mouth. He was very familiar with the issues, however, and as I described my symptoms and the order in which they appeared, he started nodding his head and stated, after confirming that it affected my genitals, "Yeah, sounds like you had a fixed drug reaction." Why was he the only medical professional who seemed to recognize and be familiar with this. I never got this reaction or level of communication from the immunologist, general practitioner, or dermatologist - all of whom seemed confused and baffled by my symptoms; "not sure what's going on, but... here, this prednisone should help.") The dentist and the dental hygienist were shocked the GP sent me home with nothing over the weekend (from day 7 to day 10 of outbreak), especially after I showed them pictures of all the sores on my lips and hard palate. ("They didn't give you any analgesic mouth rinse?!? Why didn't you call me!?!") They also said that, based upon the pictures, that would be an extremely bad flare up of oral lichen planus, and when it subsides, you still see symptoms in the mouth - which I now have none. They also said that OLP is more common on the inside of the cheeks, under and on the tongue, where I had no symptoms. This whole process has been frustrating and leaves me not knowing who to turn to or how to proceed. I still have some concerns about my liver function. In retrospect, I realize how in denial/shock I was, downplaying the pain and seriousness of what was happening, which may have led the doctors to do the same.