I’ve been meaning to write this diary for years now, but every time I try to confront it, I shy away; the pain has always been too great. But yesterday’s news that the FDA was requiring even stronger warning labels on all Fluoroquinolones — and the pharmaceutical company reactions to the new ruling — have finally pushed me to spill it… (Warning — this will be long.)
Some of you might know me as a part-time nature photographer. Like most nature photographers, I spend a lot of time looking for “the right shot”, and that often means finding just the right location to shoot. I’m mindful of my surroundings when shooting — delicate soil crusts, unstable sand beds in rivers, crumbling cliff edges, endangered plants, or being too close to animals for their comfort — I don’t want to disturb anything that should be preserved, or put myself in danger. My story today begins with a failure to properly evaluate one such situation…
I was shooting in the very gorgeous Rickett’s Glen State Park in Pennsylvania back in Autumn 2009. For those who don’t know the park, it is the southernmost “glen” park in a chain that stretches from northwest New York down to Northeast Pennsylvania — a magical place of shale carved out by two creeks, surrounded by lush deciduous forest. No fewer than 22 named waterfalls can be found within the park boundaries, some small and delicate, some majestically tall. Being a place of eroding shale and moving water, the park has very large signs warning hikers to stay away from the edges and to watch for slippery rocks. I was always highly aware of the dangers of being lost to the water or breaking bones from a fall there; I was even cautious in the flat spots — no sense twisting an ankle or something and having a rough hike out.
So it was that I stepped in to the shallow backwaters below Harrison Wright Falls — perhaps the most scenic waterfall in the park — to take a shot. There was a bit of glare on the water from the overcast day, so I stepped in a bit further into calm shallow waters, seeing a nice flat rock that I could stand on while my tripod stood just upstream. The rock was wet but rough — and covered with a transparent “something” that was frictionless. I stepped on it flat, but my foot shot out and struck the next boulder out, taking off skin through my jeans. I got the shot — which I’ve used as the diary photo above — but at a cost no-one should ever have to pay…
I am also Type 2 Diabetic, and the wound didn’t heal right. It was wide, and it just didn’t want to scab over and heal despite my exiting the park to find a convenience mart that stocked a large bandage and some Neosporin… A few days later I went to see my regular doctor. He prescribed Keflax, and that did a great job at closing things up, though it didn’t finish the job 100%. Just after I was off of the course of medication, I felt a twinge deep down in the bone by the wound. Uh, oh… So I went back to the doctor. Rather than prescribing a continuation of the Keflax or some other common antibiotic (I’m lucky enough to be not allergic to any of them), he prescribed something I hadn’t heard of — an antibiotic called Levaquin, made by Janssen (a Johnson & Johnson company).
Being somewhat cautious, I read the warning label that the pharmacy printed and stapled to the bag, and that made me a bit nervous. So I read up a bit on line... even more nervous. It was approaching Thanksgiving weekend, and I had a photo trip to Moab scheduled. After a couple of days of delay, I finally decided I had to take the medicine; after all, how many warning labels have you read that list “death” as a side-effect — it’s never happened to you, right? Or any of those other nasty side-effects — and nothing worse with antibiotics for me than the occasional upset stomach. But I didn’t know two things about Levaquin: first, that it didn’t work like other antibiotics, and second, that the warning label should have had a big black box required by the FDA — a box that wasn’t replicated on the pharmacy’s printed material.
So I took my first dose after work and headed off to Moab. I was strangely keyed up the whole way there, not the least bit sleepy though I’d had a long day and it was a long, dark and sometimes boring drive. By Thanksgiving night my body was feeling a bit odd and slightly tender in spots. I’d been walking quite a bit that day, though, so I shrugged it off. Friday morning I took a reasonably light hike, but my ankle was feeling tender and we spent most of the day in town. By Friday night I couldn’t sleep; my body was tender from top to bottom. Laying in the hotel’s relatively soft bed, my hips were digging in to my side; my legs and feet had too much pressure on them from the sheets, and my hands were uncomfortable wherever I put them. Saturday morning came, and I wasn’t good for much more than carside photography — which there’s still plenty of in the area. Saturday night was a repeat of Friday, and I almost didn’t take the medicine that night. But if it healed my leg, then some temporary pain was okay, right? It was Thanksgiving weekend, and it wasn’t like I was going to find a doctor who could tell me anything, being out in Moab and on a holiday weekend...
On Sunday we headed back early because I couldn’t deal with it any more. On the way home, I snapped mentally; I was so irrationally enraged at my wife that I felt like doing something hurtful to her that I’d never even considered before. I didn’t take another pill that evening, and I vowed it would be the last Fluoroquinolone I’d ever take. That was the beginning of my nightmare.
According to the FDA report that lead up to the latest announcement, six and a half years later I still have what they are tentatively calling Fluoroquinolone Associated Disability. I never snapped a tendon due to the adverse effects of the drug — a side-effect that is currently the subject of a consolidated class action lawsuit against the companies that sell these drugs — but I suffered much more broadly, and over a longer period of time.
- For weeks after stopping the medication, I had days where I couldn’t get out of bed from soreness, and in at least one case from lack of enough motor control to make myself move.
- I was being careful when moving, too — my ankles felt like they’d been turned to jello, which is pretty much what I’ve been told happens to your tendons to make them susceptible from these drugs; the advice was to be careful for at least six months, but when six months came around my ankles felt almost as bad as the day I stopped taking the medicine.
- Every joint in my arms and legs up to my hips and shoulders felt like they had a constant case of severe arthritis — a symptom which has now reserved itself to “the bad days”. It’s affected my previous flaring arthritis (which I’ve had since I was a teen) in weird ways, too...
- My muscles were constantly sore, as though I was always two days past heavy exercise. Like the joint pain, six and a half years later that has faded until it’s only “the bad days” where I’m in pain for no reason.
- Worse, though, were the neurological changes. The most systemic was my reaction time. When I was recovering in the first three or so years, my ability to make my body move with any speed whatsoever was limited. Running I might as well have done in a pool — that’s what it looked like I was doing when I tried. Ping pong — ha! — though I’m convinced that was the exercise that finally got me on the road to improvement. There are still far too many days when I move around at the speed of a slow turtle, looking like a very old man being gentle with his body. I just can’t go any faster — can’t push myself to even walk at a regular speed.
- By far the most worrying change along those lines, though, is the (thankfully very infrequent) breakdown of my temperament; when it happens, the least thing will make me so angry that I feel I’m going to lose it. I’ve had to take some “personal time” from work to deal with it on a couple of occasions — take myself out of circulation to try and recover. I might be willing to be feisty in a discussion or debate, but I try to be even-handed when it comes to personal interactions. The thought of another occurrence of this happening while I’m out and unable to get away scares the crap out of me.
I still get residual problems from my 5-day interaction with Fluoroquinolones. The aches and pains come and go, but I can almost always tell when they’re related to the drug reaction: I still feel tender ankles when it’s the drug and not my overall being out of shape from six years of pain. Hard physical work can set off worse episodes; some might call that the drug still working its way out of my system, though I can’t imagine it settling in that deep and that strongly. I still have to take it easy when trying to get back in to shape…
Doctors, unfortunately, only have a dim (but growing) awareness of the problems with these drugs. Even the old (2008) FDA black box warning came with an admonishment to doctors: these are not first-line medications — a warning that most doctors apparently haven’t read. And they don’t know how to deal with the side-effects; there are very few studies on what the drug does to your body, and none that I know of that prescribe effective treatments aside from waiting it out. The single most effective help I’ve found is a broad culture probiotic, taken as a regular dietary supplement. I suspect that in the future we’ll find that fecal transplants or other full-spectrum gut biota replacement therapy is the most effective solution.
I’ve considered a lawsuit, but aside from the emotional and physical pain and suffering, I’ve managed to avoid provable financial losses. My previous company was skeptical of my problems, but they never let me go, and my current job is highly understanding. My side business selling nature photography was screwed, but it wasn’t exactly a big money-maker that would be easy to use in court. With only the intangibles, a court case would seem like a rough road. The use of a new classification for my symptoms in this latest FDA report gives me a little hope, but they didn’t push to use it for insurance or disability purposes, so it’s probably too early there.
But the FDA rule is great news — if not everything that I would want. The warning label itself will now say something like “should not be prescribed for sinusitis, bronchitis, or simple UTI” along with language that it shouldn’t be prescribed unless the benefits outweigh the risks. Personally, the wording should have been more generic: “this drug is known to be a very effective but potentially dangerous last resort antibiotic; it should be prescribed only when specifically indicated or when other treatments run greater risk.” The pharmaceutical companies, unfortunately, have responded with their typical “we believe our drug to be safe and effective, and we’re reviewing the FDA’s new rule...” There’s no doubt that fluoroquinolones have saved lives, but there’s also no doubt that they’ve ruined lives. Mine will never be what it could have been, but at least now I’ve been able to write of my experience and hopefully enlighten others. If you want to read a second account, Elizabeth S. Mitchell has taken it upon herself to write a whole blog on “being floxed”, and has a strong article on Huffington Post not terribly different than my own; her article was an inspiration to me in gathering up the courage to post here. Thanks for taking the time to read.