The following post marketing reports are from the Quinolone Adverse Drug Reaction Forum hosted by Yahoo, which is independently owned and operated and has no association with the Fluoroquinolone Toxicity Research Foundation.
 

August 2004 Post Marketing Report

Rex Wockner <rex@c...>
Date: Mon Aug 2, 2004 3:49am
Subject: Update

It's now been one year since I was floxed. I wanted to post to let people know that things do get better! Until recently, all I was left with was lots of eye floaters, occasional  weirdness in my right Achilles tendon, and symptoms that recurred if I ate  chicken or soy (earlier, I had just about every symptom that has ever been
discussed here, of course). The frigging floaters are still there. Sigh. Will they ever go away ? But the feelings of weakness in my right Achilles tendon have continued to occur with less frequency.
And, I recently ate some chicken and some turkey and... nothing happened! I feel hopeful that the tendon thing will eventually disappear altogether. I'm pretty sure the poultry wasn't antibiotic-free, so that's great news. I do, though, really wish the floaters would take a hike!

k_desalvo <k_desalvo@y...>
Date: Tue Aug 3, 2004 5:29am
Subject: Am I sick?
Aloha All,
After taking Cipro in April I've been poked and prodded like everyone else. Of course every test taken has turned up with nothing. Last Sunday I had a MRI, hadn't heard anything from the Dr. so today I went in just to follow up with taking me off of prednisone, and the substantial weight and BP gain. I told her "since I haven't heard from you the MRI must have been negative". Her response was 'no, there is a disease. It's a demyelinating disease, something is attacking the nerves in my head. Since she is just a GP she doesn't have all the answers. She is going to refer me to a specialist. I will find out more later. But it was shocking to actually hear one test actually showed a abnormalty. Sounds sick eh? Though in a way it is kind of a relief after all the tests and the calls saying 'tests all are fine', they finally found something from a test.Don't know much about it or if it has anything to do with the Cipro.

Just a venting note...

Thanks for the ear/eye


marydeanwagner <wagnermd@q...>
Date: Wed Aug 4, 2004 9:45pm
Subject: Re: Cataract surgery

I had cataract on both eyes early in 2003. I also had levaquin for a sinus in 6=23=04 and suffered a tear on achillies
tendon. I am in thhe midst lf communications with Johnson & Johnson. Good luck. Mary Dean Wagner


nancynwmn <nancynwmn@y...>
Date: Fri Aug 6, 2004 6:01pm
Subject: joint weakness/stiffness


I took cipro ( two rounds of 5)in 1999. For the first two years my
ankles got so weak it was hard to walk without ace bandages. Before
I knew what caused this problem I took Cipro again 2 years later and
ended up with peripheral nerve sensitivity/numbness down the left
side of my body). As a result of taking gelatin in my water 3X a day
( which helped the joints) and Fo Ti root ( a Chinese herb) which
helps the kidneys/adrenals both problems cleared up , allowing me to
walk several miles most of the time without any pain or problem.

However, I still experience stiffness in my knees and ankles if I
haven't been moving around much and notice that if my knees are bent
in bed for a long time, and I then straighten them before I get out
of bed in the morning, I pull the ligament ( which feels like a
sprain)and it hurts all the next day or so.
I also am stillnot able to walk upstairs without my ankles and knees
swelling and getting strained.

Does anyone else have this [problem with stairs and also the easily
sprained/strained joints?

Nancy

<WAlakhdar@a...>
Date: Fri Aug 6, 2004 2:10pm
Subject: Re: joint weakness/stiffness
cipro and levaquin destroyed my knees. Flat walking doesnt strain them as
much as going up or down hill.
Mary

kangakanga123 <kangakanga123@y...>
Date: Mon Aug 9, 2004 8:29am
Subject: levaquin side effects?

hi im new. im 17 and i've been prescribed to levaquin for the second
time. the first time i dont know if i had side effects because i was
on pain killers from having my tonsils and adnoids taken out. now
that im on levaquin for the second time i've been experiencing weird
things. i feel like im a bipolar, skiztophrenic with a massive case
of ADHD. also i have extreme insomnia and diarrhea and i constantly
feel like im going to pass out. i lost the information paper on the
medicene so i found this group. can this medicene make me retarded or
anything? or are these even real side effects?


jeanhanna212 <jeanhanna212@y...>
Date: Tue Aug 10, 2004 8:33pm
Subject: disturbing head pains??


I have had these major headaches for the past few weeks. The pain is
more severe on one side of head on the right. My scalp as well as
the whole right side of my body is very sensitive to touch and I also
get periodic electrical shocks. Muscle weakness and numbness are
more severe in the right side of my body. My question is why am I
getting neuropathies in my head especially only on the right? Is
this related? I have been off quinolones for 7 months now and my
symptoms are getting worse. I fear that I might have a brain tumor.
I did get a CT scan without contrast done and it came out ok. Has
anyone else experienced these strange head symptoms?


Justin <jjmg@a...>
Date: Wed Aug 11, 2004 2:48am
Subject: Re: Update

Unfortunately my floxing was 13 months ago and I'm not seeing quite
the same level of improvement. In fact I am having NEW levels of
pain in my achilles tendons beyond anything I've had before.

I still stay away from any and all animal products that are not 100%
USDA organic, and that includes staying away from anything that might
have eggs in it even if it isn't what one would normally think of as
an animal product per se (e.g. pasta, baked goods -- even some
sorbets have egg whites!): in fact I do a lot of vegan.

I've got the floaters, too, MASSIVE amounts of them, and I notice
them all the time -- when reading, watching TV, in the bathroom (we
have light-colored shower curtains). Before floxing, I only noticed
floaters when looking at the sky and even then only very rarely.

I also have 24-hour tinnitus: one of my worst symptoms.

The past few weeks I've been in a terrible cycle. Not only my
achilles tendons, but my elbows are killing me. It's painful to even
pick up a glass of water.

I still take magnesium and a few other things.

Right now the only thing that is *relatively* under control is my
neuropathies. I get pins and needles several times a day but at the
moment (knock wood) that's the worst of it (for now). I dread
another cycle of bad neuropathies...

I'm also having a bad bout of insomnia with this cycle.

It's definitely discouraging: a year on! Most of my acquaintances
and some of my friends have given up sympathizing and I suspect are
really starting to wonder if I'm just being "negative" or something.
All I can say when people ask me if I'm better is "I wish I were, but
I won't bore you with the list of symptoms."

- Justin

build_it95 <build_it95@y...>
Date: Thu Aug 12, 2004 1:41am
Subject: Re: Update
I'm just curious if anyone else is experiencing low testosterone as I
am. The Endocrinologist I'm seeing is trying to determine if my
Pituitary gland in my brain is the problem. I was floxed 11 months
ago.


<WAlakhdar@a...>
Date: Thu Aug 12, 2004 11:08am
Subject: Re: disturbing head pains??


My symptoms are worse on one side of my body than the other. Neuropathy is
mostly on the right side, tendon problems mostly on the left side. Go figure.

Mary in CT



Brigitte <bbaas@s...>
Date: Fri Aug 13, 2004 3:08pm
Subject: Re: On freezing


To the person who had neurological problems that made her freeze when she
was walking. She will understand.. I am not feeling well enough to be able
to explain it more. I have the same problem and finally my family doctor has
found the problem... it took 4 years but better late than never.

Here is a link that describe very well the problem. Another gift from the
quinolones I suppose since I didn't have any of that before 1999. But now
there is hope of managing this better.

http://www.dystonia-foundation.org/defined/parox.asp


I really hope that it will help,

Bridge



Elexis Bunnell <rainydaytoyz@y...>
Date: Sat Aug 14, 2004 4:36am
Subject: NECK ACHES after taking CIPRO


Help. I took Cipro extended tablets for 8 days for an infected toe. On the last day my neck and back suddenly started to ache. It hurts so bad I can't even turn my head left or right or look down. It feels very stiff. Also the muscles in my feet and other parts of my body keep making popping sounds like eveything is stiff. Can this be a side effect of the Cipro. After a couple days I am getting worse not better. Is there anything can do? Rainy



Michele <mhysticeve@y...>
Date: Sun Aug 15, 2004 2:38pm
Subject: New here - Cipro joint pain?


Hi everyone. I am new here after taking the TERRIBLE drug Cipro for 2
days for a UTI. I was supposed to take 500 mg 2x a day for 3 days but
didn't make it past the 2nd day. It gave me terrible chest pain and
yesterday I noticed joint pain just about everywhere. My knees and
wrists are the worst. I am 22 years old and I feel like I am 80. I
cannot contact my Doctor until tomorrow and even then I am afraid
there will be no help for me other than a painkiller. :(
Who here has experienced joint pain after taking this terrible class
of medicine? What did your Doc say/do about it? How long did it last?
I guess I am a nervous wreck as I am, well, was a healthy person. I
am also a single mother of 3 young children. It hurts so bad to walk
I hope there is some hope ahead of me. :(


chiggins1066 <chiggins1066@y...>
Date: Sun Aug 15, 2004 3:19pm
Subject: Re: New here - Cipro joint pain?


I've had chronic joint pain for 5 months. It comes and goes. The
wrists are the worst.

I don't know how long this will go on. There is no treatment, and no
doctor will be able to give you a prognosis for recovery. These
drugs are not well understood.


Debra Morse <debm@c...>
Date: Mon Aug 16, 2004 4:48pm
Subject: Re: NECK ACHES after taking CIPRO


Hi,

I took Levaquin instead of Cipro but I also had the stiff and sore neck problems
for a while. Thankfully they didn't last too long for me as I was also struggling
with much more severe problems elsewhere. However, my father was just prescribed
Cipro for a bladder infection and when I found out, I went online and printed
out a PDF document from Bayer about Cipro for him to show his doctor in order
to get him to prescribe something else and one of the things I remember reading
was a side effect is problems with the feet! You might want to do a google
search for Cipro. One of the sites that comes up is Bayer's. They will have
a PDF document that you can print out that has all the information on the drug
including the side effects.

Thankfully, his doctor didn't argue with us and prescribed a different antibiotic
for dad!!!

Debra


Honey Moon <snapdragon928@w...>
Date: Sat Aug 21, 2004 2:26am
Subject: bridgette on freezing


What did your doctor say about your dystonia? Did he admit it was the
drug? I believe it is listed as a side effect. I am still having bad
spells of it, my face scrunches right up and my jaw felt like it was
going to be ripped off my face earlier today.I squeeze my hands up so
tight it hurts.It can be very painful. I also have dysarthria. So my
speach is screwed up half the time.So Im curoius as to what your doc
said. My eeg was normal.


Honey Moon <snapdragon928@w...>
Date: Sat Aug 21, 2004 2:35am
Subject: long lasting effects and articles on this


I need some articles that talk about the adverse reactions lasting
after the med is discontinued, medical ones. Please direct me where
to look, so I can show the doctors who want me to see someone ( like
a psychiatrist) because it can't be the drug still affecting me, so
its in my head.Because the tests say everything is ok, even though
all these side effects are listed in the drug pamplets. Oh, I also
found out that two of the meds I am on, one that was given to me to
control the adverse reaction I am having(Tics, dystonia, disarthria)
also cause these problems. hhhhmmmm. Whats the deal with that?I have
to talk to the doctors about that. (buspar and lexapro).


Brigitte <bbaas@s...>
Date: Sat Aug 21, 2004 4:41am
Subject: Re: bridgette on freezing


I am sorry that you're not getting better and that you have to suffer like
this.I am also having a lot of spells this year, seems to be getting worse
instead of getting better and my memory is not getting better either.
It is a long long story since I just moved back home after being away for a
little more than three years, so I am starting the rounds of doctors once
again. My family doctor took me back and at the second visit seeing how I
was walking has decided to send me to Movement disorder specialist who
specializes in Dystonia.. My appointment is at the end of September. My last
Sleep deprived EEG was not normal but I don't really understand what the
results means.

'' shows some aberrant activity from the right temporal region with sharp
waves during sleep.'' maybe someone could explain this to me..

The neurologist that ordered this test could only say that it was quite
bizarre and that I was bizarre. I didn't need her to tell me that.

So now I am praying that new neurologist knows enough about all this to help
me so I can go back to my life and find work.

I'll do my best to remember to let you know what he says about this.

Brigitte


<snapdragon928@w...>
Date: Sat Aug 21, 2004 8:52am
Subject: Re: Digest Number 1635


thank you and good luck to you. Thats what my neurologist did also is refer
me to a movement disorder specialist.My Doctor thought that I was having
temporal lobe seizures, that may be what they were looking for on your eeg.


<m.aria@p...>
Date: Mon Aug 23, 2004 8:13am
Subject: Help needed


Hi all,

I've been prescribed floxin for UTI. Took 1 200mg pill and had
electrical "shots" in my upper body. As I do have some allergies to
medication, I searched the net for information on floxin and so came
upon the many horror stories. An hour later, my knees and calf start
to hurt a little (very briefly). I will not continue with the floxin,
but am worried that damage is already done. I am trying to flush my
system out with lots of water, but it seems that floxin somehow stays
in the body to continue with its damage.

Is there anyone who can help me? Offer any advice or tell me what
further damage I can expect? It's so desperate that in order to cure
a sickness, I have caused another. I hope it's just my imagination, I
really do.


<m.aria@p...>
Date: Mon Aug 23, 2004 3:54pm
Subject: Re: Help needed


Hi,

Thanks to those who responded. I was ony able to get my hands on
magnesium 5.5 hours later, which is probably too late. The only
magnesium I could get was in an antacid. Took 1000mg, and 3 hours
later, another 1000mg. Will take another 2000mg before I go to bed. I
don't know how many cups of water I've been drinking, but i need to
go to the toilet every 1/2 hour or so, and my urine is clear
(colourless). As I'm still experiencing the ill-effects, I begin to
wonder if the floxin can be flushed out. If so, how come the symptoms
persists for years in some people, and even seem to get worse.

The Symptoms:

The symptoms are changing loction. Next was a terrible feeling in my
left elbow...just like when you hit your funny bone, though not as
intense. My lower legs are starting to have a slight ache, and short
stabbing pains are still occuring in my knees, especially on the
inside (this is the worst and most persistant symptom). My right
ankle ached for a short while, then pain in my finger joint coupled
with a burning sensation.

I can't believe all this could be happening because of one miserable
pill. With the stabbing pain all over my body, I am sure now that I
am not imagining things. It occured to me that the doctor might have
prescribed this to many other people. I wonder if such a reaction
occurs only in a few rare cases and I'm just the unlucky one, or
there are others who just never associate the pills with the symptoms.

I will be updating my situation for as long as this goes on. I'm
beginning to think that for every pill out there, there should be
something that can counteract it...like an antidote or something.

And for those with UTI, drink lots of cranberry juice (1-2 litres a
day)...and keep at it for 2 more days after the symptoms have
subsided. It works...just that I was too impatient.


<m.aria@p...>
Date: Tue Aug 24, 2004 7:39am
Subject: Advice and some information needed


Hi again,

Sorry to have to trouble you but there are a few questions I'd like
to ask:

1) I had my wisdom teeth extracted (trouble -free) a week ago and
arranged for the other to be extracted this Friday.Since floxin
affects the connective tissues, and extraction/fillings kind of
weakens the other teeth temporarily, I would like to know if there is
any danger to go ahead with my dental appointment on Friday.

2) Is there anyone who has experienced pain in the nail bed
(connective tissue?)and loosened nail or teeth/had teeth fall out etc?

3) I have read some stories on how magnesium improved certain
individuals' conditions. Do I have to take it for the rest of my
life? Will stopping it after the symptoms subside cause a flare up
again?

I would appreciate any tiny bit of advice. Thks.


<m.aria@p...>
Date: Tue Aug 24, 2004 8:45am
Subject: Doctor's denial (was 'Help Needed)


I just called the doctor up regarding the effects I have been
experiencing and he denies that the Floxin caused it. I'm so
fustrated. I feel like crying. Nothings getting better. My skin is
burning and now my sides hurt...


raemuir <mlvoght@s...>
Date: Wed Aug 25, 2004 9:36pm
Subject: 2 1/2 years after Cipro


Today marks the 2 year, 6 month anniversary of taking two Cipro
tablets, and suffering an adverse reaction that included everything
mentioned on the package insert. I'm happy to report that I have
recovered about 90% of my pre-Cipro fitness, although I still have
pain in my Achilles tendons after exercise, and periods of extreme
exhaustion. I'm able to hike my favorite mountain trails again,
although not at my former level. Part of this decline may be advancing
age, since next month I turn 70.
I control my symptoms through diet, eat only grass-fed beef and
hand-raised pork, organic poultry, fish, and organic dairy products.
It is easy, however, to slip up. About 2 weeks ago I grabbed a carton
of regular milk to make muffins, ate one, and paid for it the next day
with aching legs and hips.
Medications? None. Absolutely nothing. A few weeks ago I saw an eye
doctor and he was amazed that I had made no entry in the "drugs I
take" form. Lately I began a list of adverse reactions I've had to
various drugs, over the counter and prescription, and realized I've
been forced into the ranks of the unmedicated. Big pharma must hate me.
Marty Voght, Bishop, California


<kings1978@y...>
Date: Thu Aug 26, 2004 1:47am
Subject: Re: 2 1/2 years after Cipro


Thank you very much for this report. We all need to hear
things like this. It took me over a yr to get somewhere near
normal after the first onslaught of FQ, and a bit longer to recover
from the second symptomatic exposure. I still live with some
symptoms but like you I have an active "management" program,
don't over-extend myself, and DON'T take any drugs.

To Life!


sdowns1122 <smd71@h...>
Date: Thu Aug 26, 2004 1:24pm
Subject: Just stopped levaquin today


glad this forum is here. i've been on levaquin for prostatitis for
about 2 wks now. about 4-5 days ago i started getting pain in my
calves, but i thought it was because of playing softball. then my
elbows started to ache a bit, and i thought it was because of my
workouts. but today i finally figured out something wasn't right and
after reading up on the side effects, i called my dr and he said to
stop taking it and talk to him in a couple of days. now i'm just a
bit worried that i've done irreparable damage to myself. my calves
hurt enough that i can't run, but i can still walk around with
minimal pain. i just hope this pain is something that diminishes with
time, but reading everything online makes me think i'll have to deal
with it for a while...and that pisses me off a bit to say the least.

anyway, just glad this is here to express what i'm going through.


toomuchpsi383 <toomuchpsi383@y...>
Date: Thu Aug 26, 2004 6:39pm
Subject: Re: 2 1/2 years after Cipro


Congrats on your recovery Marty. It is always good to hear this kind
of news! That is awesome!

It took a good 2 years before I posted about recovering.. It took a
long long time to heal from this poison.. It will be 3 years this
october. I still have ringing in th ears, occasional muscle twitching
and minor vision problems, but the majority of the nightmare problems
are gone and have not "cycled" at all anymore.. I might be in the
clear. I hope I did not jinx myself :)

Kevin


carolhorton12 <carolthorton@a...>
Date: Sun Aug 29, 2004 4:00pm
Subject: Re: Just stopped levaquin today


I, too, took levaquin for 2 weeks. After 4 days my ankles got sore
but, like you, I thought I was just stiff so I kept exercising. That
was precisely the WRONG THING to do, and I ended up 2 weeks later
rupturing both of my achilles tendons. Had I been warned by the doc
that problems with achilles were a possible ADR I would have stopped
exercising immediately and probably with a little time the problem
would have gone away. So what I'm trying to say is: take it VERY
easy for awhile - don't walk any more than you absolutely need to
until the pain goes away.
Carol



<WAlakhdar@a...>
Date: Sun Aug 29, 2004 6:48pm
Subject: heading into surgery


Hi:

This is Mary in CT. It has been since February of this year that I was
floxed, and as some symptoms have steadied themselves and backed off a little,
the worst left remaining are the problem of sleep, the sweating, and the
ligaments of my left knee.

I recently, finally!, got an MRI of the left knee (we will do one of the
right knee after we take care of the left). I knew going into the MRI that they
would find something severely wrong because of the excrutiating pain. As it
turns out, I have a torn meniscus disk. The doc said he couldn't tell from
the MRI if the tendons are damaged. Maybe that is because I am overweight?

But I am now scheduled to have the surgery to "clean up the area" on October
4th. I am nervous about it for several reasons......1. going "under"
scares me
2. further
damaging and irritating the tendons

I don't know if anyone out there has had this "arthroscopic" procedure done,
and how it turned out of course.

Advice? Suggestions? Concerns?

Please, all are welcome.

Mary

John Edward Roe <angelbab@s...>
Date: Sun Aug 29, 2004 11:52pm
Subject: Re: Re: Just stopped levaquin today


Hi, I am a fellow Levaquin and Cipro survivor, and I too have had the achilles tendon pain with rupturing, as well as a torn plantar fascia on the bottom of my right foot. This all initially began back in April of 2000, and then last summer, of 2003, began with severe right ankle pain, and back to the doc who put me in air casts on both legs to settle them down. Went to 2 specialized surgeons, for the achilles tendons, and neither would touch me. Told me to wean out of the casts, but to keep them handy in case I needed them again, and you know what, jus this past week, the ankle is starting up again, so it appears that I will have to go back in my casts at least temporarily. I have been in two hard casts, as well as long black braces/boots and now the air casts, which feel the best...all because of the tendons. I had shoulder surgery last January, for a torn tendon and a spur, and I still am not over it...so I don't recommend surgery unless it has to be done no matter what. You
are right, however, in recommending little use of the legs and feet. I have a wheelchair and crutches and a quad cane, as well as a walker, so I am fixed up, but hate to use them unless I have no choice. There sure are lots of us out here....good luck! NR



carolhorton12 <carolthorton@a...> wrote:
I, too, took levaquin for 2 weeks. After 4 days my ankles got sore
but, like you, I thought I was just stiff so I kept exercising. That
was precisely the WRONG THING to do, and I ended up 2 weeks later
rupturing both of my achilles tendons. Had I been warned by the doc
that problems with achilles were a possible ADR I would have stopped
exercising immediately and probably with a little time the problem
would have gone away. So what I'm trying to say is: take it VERY
easy for awhile - don't walk any more than you absolutely need to
until the pain goes away.
Carol


kardok69 <kardok69@y...>
Date: Mon Aug 30, 2004 2:35pm
Subject: friend suffering


My friend has been suffering from an adverse reaction to Levaquin
clonazepam and other quinolone drugs since january 2004
all over a severe ear infection that started off normallyand has
recently gotten to the point of his life`s work suffering loss of
any and all common sense with what is happenning to him.
we`ve been to allergists, doctor after doctor and they keep pushing
more different drugs on him.
somebody has got to have an answer I can`t stand seeing this man
wither away PLEASE HELP!!!!!


michaelbeans2003 <michaelbeans@h...>
Date: Mon Aug 30, 2004 3:50pm
Subject: Cipro and Dystonia, my story.


Hello to all. My name is Michael and I have been floxed twice. The
first floxing was in Sept of '99. Took Cipro 500mg for five days and
lost the ability to speak and walk for most of the first ten days. I
was misdiagnosed with being "bipolar type 2. It took almost three
years to finally recover. In Nov of '03 I had a prostate infection.
Doc prescibes Cipro XR 500mg for ten days. Infection came right back and extreme joint pain and severe depression came with it. Doc then prescibes Cipro 1000mg a day for 2 wks and prescibed me a NSAID,
Celebrex, for the pain. As I now know, big mistake! The siezures
started in the last three days of the two weeks on high doses of
Cipro. I ruptured a tendon in my right hand and the tendon in the
arch of my right foot callapsed. After MRI's and EEG's and no
insurance I am now facing bankruptcy and am fully disabled by Social
Security. I was diagnosed with geneeralized dystonia in March
of '04. I have severe speach problems when I cycle into my siezures.
I usually get one week of no siezures and then I have a ten days to
two weeks of siezures. Also have peripheral neuropathy in my hands
feet and groin. I have "electic shocks" daily that run from the base
of my skull down my spine into my groin. We all have our stories and
I'm not here complaining. Its a rough ride at times, but there is no
giving up. I have found a compliment of supplements that seem to
help. Lots of GABA,B1,B6,Magnesium, Manganese. I am getting ready to
start a "Chelation Therapy" next week to try and remove the flouride
from my brain. Its a shot in the dark but i have to try. The only
presciption drugs I take are Ativan as needed for siezures. And 20mg of Celexa a day.(Mainly because without the anti depressent I am fully suicidal.) Cipro has a tendency to damage your Gaba, dopamine and seratonin receptors. That is why so many floroquinolone ADR victims commit suicide. Sorry I am rambling away. God Bless us all.