This personal story was originally posted to the Quinolone Adverse Reaction Forum. If you are a victim of a quinolone antibiotic and need support or advice then please visit the Quinolone Adverse Reaction Forum (http://groups.yahoo.com/group/quinolones/).
 

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This personal story was originally posted to the Quinolone Adverse Reaction Forum. If you are a victim of a quinolone antibiotic and need support or advice then please visit the Quinolone Adverse Reaction Forum (http://groups.yahoo.com/group/quinolones/).

Levaquin
Posted on 21 March 2002
I'm new to computers and new to this group, but not new to the adverse reactions of Levaquin. It has been validating to learn that I'm not alone. Physicians here, in general (excluding my husband, who has been quite helpful, and in fact, first suggested that I might be having a "hypersensitive arthralgia" to the antibiotic) have kind of blown it off. I did the route from internist to rheumatologist, as many of you have, only to be told time and again that everything came up "normal." I began to feel like they all thought I was a hypochondriac! I even did a second round with all these docs armed with articles about floroquinolone reactions, and a personal reply written to my husband from Jay Cohen (he authored the research published in the Annals of Pharmocotherapy). I still got the feeling that they were humoring me, probably because my husband is a physician.

So this group is a godsend!

I'm being longwinded. I guess it's just so relieving to know that you aren't rolling your eyes and shaking your heads behind my back!

I began a two-week course of Levaquin on September 6, 2001, handed out glibly, I now believe (the surgeon had samples!!) for a wound infection following foot surgery. Within 72 hours after taking the first dose (500 mg. 2xday) I could barely stand! We were on a small sailboat with another couple for a week in the Chesapeake Bay, and since we weren't moving around a lot, I really didn't know I was in trouble until we overnighted at a marina and I couldn't make it down the length of the dock! Since I was still on crutches from the foot surgery (on a sailboat?...am I CRAZY?!), I thought it was just the circumstances. But then I was spiking a sweat, flushed, kind of hotflash period each evening, accompanied by unsettling mental confusion. Being the trouper I am, I never said anything about any of this to anybody, for fear of being a drag. They just thought I was having difficulties maneuvering around the boat with my bootcast, etc. I privately thought I was dying; I imagined ruining the vacation, what with 911 and ambulances and everything!

But here I am, six months later, alive but not well; certainly not the indomitable, active person I formerly was. I have chronic muscle/joint pain that limits my whole life. Prior to Levaquin, my daily routine could be described as one of high physical endurance: I have a barnyard full of rescued animals (llamas, alpacas, sheep, goats, pigs, chickens, ducks, peacocks and a goose named Lucy) and a houseful of three large dogs (two Great Pyrs and a Newfie), two cats and a talkative African Grey Parrot named Einstein. I cleaned out the barn every morning, fed and watered and gave meds to all the animals; cleaned our house, did laundry, grocery shopping and errands; walked the dogs on a five-mile park trail; enjoyed cooking creative dinners; and then returned to the barn at dusk to repeat feedings and meds. I accomplished all this and more, with energy and strength to spare.

Conversely, a month AL (After Levaquin), my muscle/joint pain was so limiting that I required a wheelchair to get through an airport. I was unable to stand or walk for even a short period of time. My husband remarked that my physical stamina had "aged twenty years" over several weeks. I couldn't walk from the parking lot to the grocery store, let alone cook a meal. Maybe if I were more of a couch potato, this wouldn't be so distressing; but it's wrecked ME being ME. Don't worry: by sheer willpower I take excellent care of all my creatures; dinner goes to pot!

In the past couple of months my symptoms have somewhat decreased. I can do more... grocery shop, walk the dogs 1/4 mile, make modest meals... but honestly, I am running on sheer determination by evening. Nothing alleviates the muscle pain (except a couple glasses or so of wine, which I understand is counterindicated, but oh well).

I am in the process of filing an official ADR report with the Drug and Safety Surveillance Department of Johnson & Johnson; my internist has agreed to file the information. I understand that for most people, fluoroquinoline adverse reactions are uncommon, and usually mild and brief. I have not been so lucky. In the wake of the anthrax threat and the subsequent hasty, cavalier prescribing of ciprofloxin, there are more and more emerging reports of severe, longterm effects. I have vehemently insisted on filing an ADR because I feel it is important that physicians and the public are made aware of the possible risks associated with fluoroquinolone therapy. Physicians are not entirely open to this!! I am having some perverse fun conducting what I politely coin my "campaign for caution!"

This is too long, I know. I think I needed to just get it all said, to an audience that won't look at me cock-eyed! And anyway, it's my first try at this computer stuff; I'm curious to learn how it works and if I fit in.

I have hope for all of you and for myself; I know how devastating it is to wake up and think today will be a new day, only to feel crippled again after the smallest of efforts. I am constantly reminded of a saying among veterenarians: "If wishes were horse, Beggars would ride. May we all ride again, soon.

Originally posted on the Quinolone Adverse Reaction Forum at http://groups.yahoo.com/group/quinolones/message/7159