Post Marketing Reports for March 2002

From: rosie cline <rcline_00@y...>
Date: Sat Mar 2, 2002 9:49 am
Subject: Re: [quinolones] Joint Pain

Hello there...
I have had joint pain in one elbow and both knees since I had my 2nd round of
Levaquin. After the first, I thought it was Arthritis.
After the second, I could barely walk and have been in pain since June 2001. I
just have had one knee "scoped" and have been told that it would be only a
temporary fix for the other knee and they would not suggest it. I have been to
more Drs. since last June than I have ever been in my life. The Drs.must
think that I a m crazy and my husband must also think that I am crazy. I have
had blood work done at least 5 times since then and the Drs. think that I have
Lupus even though I have "no symptons". I definately have inflammation in my
joints but no burning sensation. Is this due to the Levaquin or is it my
imagination?
I have an appointment with a Rhuematologist in three weeks, I have been told
that this Dr. can tell me if I have Lupus. I certainly have gone "downhill"
suddenly. I am tired of being in pain. I certainly feel for all of you that
have been in pain also.

I am not sure what to do next.

Rosie


From: "versaa" <versaa@y...>
Date: Sun Mar 3, 2002 4:44 am
Subject: Levaquin, rash, insomnia and You!
I was prescribed Levaquin (500 mgs for 7 days) by my doctor for
bronchitis. I had just 2 doses so far and have noticed a sand-papery
rash on my face, swelling and burning of my lips (angioedema), slight
depression, irritability and insomnia. Because I haven't been able
to sleep, I decided to look up "Levaquin" just for fun. "Fun" has
turned into "scary" as I read this message board. I had no idea
(even though I read the accompanying warnings) that Levaquin could
cause so much trouble, but reading this message board sure explains
alot.

Since it's 2:35am and Sunday morning, I'll have to wait until Monday
before I can contact my doctor, but I'm stopping the Levaquin on my
own. I just took some multi-vitamins and extra calcium and will look
into other things to clean out my system. My allergy medicine,
Allegra seems to help the painful lip swelling, burning, and
blistering down, but I don't think I want to take it 4+ times a day.

Thank you to everyone who has shared their experiences on this super
helpful and informative message board! I wish all of you well and
the best of health! May others be as fortunate to find this group as
well.






From: "susanboltuch" <susanboltuch@y...>
Date: Wed Mar 20, 2002 4:32 pm
Subject: YET ANOTHER LEVAQUIN STORY


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


From: "alexandria812" <alexandria812@y...>
Date: Thu Mar 21, 2002 1:51 pm
Subject: New to group
I just found out about all this. I took cipro for kidney infections.
I probably took this about 10 different times. I cannot believe this.
I have had pn for about 5 yrs. around I took this medicine. They tell
me they dont know why I have the PN. I would love to chat with anyone
about this my yahoo name is alexandria812. Is there anything that can
be done about this. Like help from the drug company???? This is
horrible.

From: mich19540906@a...
Date: Sun Mar 24, 2002 7:37 am
Subject: avelox - insomnia/mania = text
hi - i'm new to the world of email & my last message arrived with no text so
i'll try again.
my daughter was given avelox for bronchitis at college. while on it the first
time she ended up in jail after fleeing from police and alegedly assaulting
them. she returned home (this episode frightened me as she had previously
been fun loving and non-violent) and felt her bronchitis act up again - she
had some remaining avelox and took it. three days later she ended up in a
pysch ward of a hospital - she had displayed characteristics of a
manic-depression but was fine after sleeping for 30 hrs.
does anyone know of others having similar reactions?
we find ourselves in the position of proving her ' visit ' to the hospital
was not staged and proving that her assault on the police was due to factors
beyond her control.
as parents we are devestated as she had dreams of being a high school english
teacher, she is an honor student and a good athlete. it will be an uphill
battle to keep her from having a felony record because of this!
most of the reactions i've read about in your forum speak of acute pain
resulting from quinolones, i've yet to hear of this type of reaction although
central nervous system disorders are listed in possible reactions.
thanks for any info -
michele


From: "markinlouky" <markinlouky@h...>
Date: Thu Mar 28, 2002 2:20 pm
Subject: Yet ANOTHER Levaquin story!!!

Hi, all …

I'm a newcomer to this forum, having become yet another
fluoroquinolone statistic. I'm posting my story here because I
need to do some major venting. Frankly, I hope to never lay eyes on
another pompous M.D., or facsimile thereof, again in my life …
unless, of course, my arms fall off or something. In any case, this
tirade is probably going to make for a lengthy post, so my apologies
in advance …

I am a 31-year-old male and I was referred to my doctor's
"good urologist buddy" back in January for what was supposed
to be some sort of low-level prostatitis. The symptoms I was
experiencing from this were in no way debilitating and were, if
anything, an annoyance. But in a decision that I now regret, I
decided to take my doctor up on his referral. In late January, I
paid a visit to this urologist who confirmed the suspicions of my
PCP, saying that, yes indeedy-do, he was 95% certain that I had
some "low-level prostatitis" going, so he prescribed Levaquin.

The regiment seemed extensive: 500 milligrams a day for 42 days.
Having never had problems with antibiotics (or ANY prescribed
medication, for that matter) before, I threw away the insert without
even reading it, thinking that I had every reason to do exactly as
the good doctor ordered: one capsule per day for 42 days—"the
full dose every time." (Anybody ever seen "Wit"?)

After about the 10th day or so, I noticed my right eye twitching.
This lasted about a week and I didn't associate it with the
Levaquin. After about the 20th day, I started noticing some even
stranger goings-on. I had begun an exercise and yoga regime just
after Christmas, and by mid-February, I noticed that it was becoming
more difficult to hold some of the yoga poses—my body would shake
under the strain and my balance was worse than ever. I was also
becoming tired a lot and when I tried to close my eyes to take naps,
it would feel as if the room was spinning, similar to that feeling
you get right after being shaken very, very hard. The thought still
never crossed my mind that it could be the Levaquin—I mean, it
was just some little harmless antibiotic, right?

So, I continued to brush off these oddities until later in
February—after almost 30 days of taking the Levaquin. I was
driving back to work from my lunch break when suddenly my right thumb
started to twitch like it had a mind of its own. By the time I got
to work, the quivering was running all the way up my right arm into
the side of my head; I felt like I had palsy or something. Still not
associating it with the Levaquin, I immediately turned to the
internet in an impulsive and frantic attempt to figure out what was
wrong with me. Well, this was Mistake #2. Instead of assuaging any
anxiety, my search just made things worse: MS! ALS! MYASTHENIA
GRAVIS! FIBROMYALGIA! BRAIN TUMOR! All sorts of fun NEUROPATHY!
But the horror story I really became obsessed with was PARKINSON'S
DISEASE! Yes, I really believed I had Parkinson's, and this led
to a really fun two-day series of—you guessed it—PANIC
ATTACKS.

That's right, for two days I lived in a nightmare. I was
convinced I was going to die, and I thought I was going crazy to
boot: pacing restlessly, shaking, quivering, feeling like I was
going to jump out of my skin. I finally gave in and told a friend
what was going on, and that helped a lot. Through all that haze,
somehow I began to think a little more rationally. What I was
feeling was completely out of the ordinary, almost chemical, like a
drug trip or something. Could it be the antibiotic? The Levaquin?
Still not entirely convinced that a simple antibiotic could cause
such bizarre symptoms, I nevertheless returned to the internet for a
search on this drug.

What I read was both a relief and yet another source for
disturbance—to find that so many others were having similar,
unrelenting reactions to this God-forsaken drug and that it is STILL
being prescribed to unsuspecting saps like me was disconcerting. I
stopped taking it immediately, and a couple weeks later I went back
to the urologist for my six-week follow-up.

And it was after my second visit to the urologist that I decided I
loathed the medical profession. After sitting in the waiting room
for almost an hour with nothing to do but read a six-month-old copy
of "People" and the "Good News" bible, after getting
highly p.o.'d at the receptionist who not only yelled my name
across the waiting room but asked personal questions in full earshot
of the other waiting patients, after finally making it in and telling
the urologist about what this medicine had done to me, what does he
do? He cuts me off and holds up his finger and says, "One
percent. Just one percentof patients have side effects from this drug
and it's usually the elderly. I wouldn't have prescribed it
if I thought it would do that."

I didn't even argue with him. I could see that he was just
protecting himself and trying to make me think I was just a
hypochondriac. I did tell him I was going homeopathic all the way
from now on, to which he replied snidely, "Well maybe you can
educate me on that." Truth be told, I'm sure he really does
believeme, but he had to protect himself. The era of people helping
people is gone. Doctors have been reduced to soulless androids.

So where am I now, a month after taking my last dose of Levaquin?
I'm somewhat better, but it comes and goes. I still have a lot
of problems with twitching and shaking all over. I don't have as
much anxiety as before and the panic attacks are gone, but I still
tire very easily which isn't much of a motivator to engage in all
the activities I once enjoyed. In any case, I'm glad this group
is here (although I bewail the fact that it's necessary), and I
feel better having posted this story. Thanks to all who listened!

Mark


From: ymsgr:sendIM?peter20740ymsgr:sendIM?peter20740"peter20740" <peter20740@y...>
Date: Sun Mar 31, 2002 10:20 am
Subject: levaquin reactions?

I am a 35 old black male taking levaquin. I cannot get out of bed in
the moring. In the morning i feel like I was hit my a train. Almost
every joint in my body is hurting.I also feels like my internal
organs are falling out. Do anyone have this problem with this
medication. Should I stop or finish the treatment?. what other med is
a good replacement with less side effects

Please email me at peter20740@y...