Post Marketing Reports for November 2001

I spoke with my pharmacist today about Cipro and was told that those side
effects, eg, tendon problems, are very
rare. I had asked when I got the prescription 2 months ago about side effects
and was not told of any of those
discussed on this list.
Jeffrey ---------


From: Mary Templeton <flnolegirl@y...>
Date: Thu Nov 1, 2001 5:29 am
Subject: Severe pain and knot below left knee
Hi all,
I am in severe pain today. I was alright yesterday
and took my little girls trick or treating last night,
but today I woke up with pain upon flexing my leg and
knee and upon walking, also I have a knot on the side
of my left leg right below my knee. Could this be a
tendon or joint problem???? I was just wondering if
anyone has had a simaliar experience, and if so what
it could be. I have always been healthy somehow once
again I suspect that darned quinolone antibiotic I
took in July. Thanks to all of you who can help me!!!

Mary


From: sdorshan@a...
Date: Sun Nov 4, 2001 2:24 pm
Subject: Re: Levaquin - Oh, my legs!
>>>>I took my first Levaquin 500mg Oct. 30, 2001, at 2 in the afternoon.
Later that night, my left knee started hurting. Who would connect
knee pain with taking a pill? Oct. 31, 2001, at 3 in the afternoon,
I took my second and LAST Levaquin. After going to the Internet and
reading about Levaquin, I flushed the remaining 4 pills down the
toilet. By bedtime I could not bend my left leg at the knee. It
felt tight and swollen and hurt mainly in about a 6 inch span going
from my knee upward. My right leg started feeling the same way, but
not as badly. <<<<

Susan - this is exactly what happened to me after 1 Levaquin (except that I
had taken Levaquin, Floxin and Cipro before that without any problem). I
don't remember how long the pain lasted, but I'm pretty sure it was gone
within a few days. I have no lasting knee problems at all.

Just go easy on the legs, and give it a few days.

Scott


From: "Dorsa Warr" <lndwarr@p...>
Date: Thu Nov 15, 2001 10:29 am
Subject: oldster;
Hi group,
Just found this site after contacting Stephen Fried,, the father of this whole
research.... it was his article in the Philladelphia magazine,"less than one
percent" about the reaction his wife had to Floxin that brought about the
massive interest in FQ adverse reaction... he at the time was not aware that it
had happened to anyone else...he began receiving mail from people saying"me
to!!!"
This was in april of 1993
In Nov of 1993 I was given Floxin for a urinary infection... (which makes you
plenty sick to begin with..) I was given floxin and took it twice a day for
almost a week...what I could keep down anyway.... thanks to the vomiting it
caused I may have injested less that I actually swallowed....
I ended up in the ER 3 times that week with accute dehydration from a constant
103.5 fever....
finally the dr decided that it may be a reaction and took me off the floxin...
by then the bacteria in the kidneys was gone but all the side effect were
left....
I has been 8 years now and Im 57 year old female....
I still suffer from the effects,,,,
I dont want to discourage newbies.... but please dont ever fool yourself into
thinking someday you will be cured..... you will get better and you will learn
to live with the pain....
I didnt have the leg and achilles problem but I have had to have neck surgury
and wrist surgury, have a recently blown tendon in my shoulder and the other
side is acting up also..
8 years later ,,can it be blamed on floxin... I dont know... but I feel in my
heart it is...
everyday I hurt some where else.... rarely the same place... but it moves
around enough that I know it isnt a ",pulled muscle" from some sort of
activity..
Over the years I have tried every thing and "everything" has worked for a
little while..massage and hot tubs work well... but only temporary relief..

During the time I was taking floxin these are the symptoms I had...

fever 103.5 constantly
uncontrollable shakin
insomnia
accute pain all over,,muscle and skin...
metal taste and smell in mouth and nose
wide awake hallucinations
memory loss
aphasia (cant get the right word out)
accute dehydration
white blindness,,,cloudy visual distortions
chills constantly ..could not get warm..
could not eat
nausea
vomiting
extreme headache
confusion.(could not dial the phone)

symptoms 1 year later
anemia
low energy
aphasia
agitation-frustration
heart beats fast some times
depression
visual distortions...light flickers and movement ,seen out of the corner of my
eyes
tingling of hands and arms.
neck and back pain
fibromyalgia (drs..say)
headaches
memory loss

symptoms 3 years later
fribromyalgia
tingling if extremities
memory loss
back pain that moves around
visual distortions... flickers and movement seen from corner of eyes
inability to focus
depression..
agitation and frustration

symptoms 8 years later...
nothing has changed so my guess is that this is as good as it gets..
only now my shoulder feel like a tendon is being pinched between the joints and
snd shooting pains thru my arm and shoulder... had ex rays yesterday to find
out...
also in the last 3years my hips have become involved in the constant aching.

At that time Opra Winfrey did a show to draw attention to this as one of her tv
crew had experienced reaction to floxin...
a number of us tried to get something done and ran into roadblocks every
where.... money to fight drug companies is just not there ,, even
collectively.... plus at the time the governmnt had a protective umbrella over
the drug co's
I personally printed and copied everything I could find and mailed it to many
urologists in the Portland Ore area to try to spread the word.... who knows if
it ever got past the receptionist....I never got a reply...and to this day
every Dr I meet I ask if they are away of the effects of FQ... and sadly to say
the majority of them think Im nuts... and say they never have heard of
problems..
well.....now thanks to anthrax threat.... Im sure they all will know...
because of the wide publicized use of cipro recentlly... I was curious to know
if anyone was still aware of the problem... so I contacted Stephen Fried who
gave me this group address....
I must admit I have been out of the loop for many years... and did not even
know about the levequan ADR...
Im so sorry we could not do more to prevent this atrocity... in 1994... but I
assure you many of us did... to no avail. and finally we had to get on with our
lives and learn how to live with being Floxed....
Dont let any one tell you the drug companies dont know.... they do and they
dont care.. its all about money.
Omniflox was pulled of the market in just a few months because people died
right and left from it... so they created Floxin which didnt kill as many and
merely maimed them...but left the drug co..on better legal ground...
they keep improving the drug ..or changing the name should i say to make it
look like they are improving it.
On the insert in the floxin package (which I had to take to a copy store and
have it enlarged as the printing was miniscule)it says... can cause RENAL
failure..... thats kidneys..kids... and what are they giving it to most people
for..???? kidney infections..bladder infections.....!!!!! if that isnt a case
for malpractice..!!! but again ... only if you have money,,


Dr David Flockhart from Georgetown Univ. stated that FQ's were overkill... that
using them for ordinary infections was like hunting a fly with a shotgun.....
these drugs should only be given when all else has failed and you might die...
then it would be worth the risk of the FQ side effects.

But the good news is ....since the anthrax scare is so widely publicized ...the
word about FQ's will get out....
I encourage all of you to write your congress man... copy new reports and send
to your local hospitals...hand write to your doctor at his home... especially
those who have denied any connection of your symptoms with FQ'

Get the word out.... tell everyone that you know... especially those who are
pregnant and with children...

write the names of all the FQ's on the back of your business card and give to
friends and ask them to please show this to the pharmacist when they are
filling a rx and ask if its one of them...

My family and friends have had this put on their charts at the dr office and
school... no Fluroqunolones allergic... !!!!!
those who have lived with or around me are aware and have helped me with the
crusade..

E-mail others about it other than just this web group..
But keep on.... keepin on !!

Read stephens article in Philadelphia magazine..april 1993 "less than one
percent" and you will realize how long this has been going on...

Good luck
www.stephenfried.com
www.bitter-pills.com

here are 2 more web sites about FQ's and other drugs....

I think we have a chance now to be heard.... now that Cipro is on the lips of
everyone... and we will have a lot more victims with a voice...sadly..
thanks everyone...
dont get discouraged.... try everything... it all works at least a little..

Dorsa Warr
<mailto:lndwarr@p...>

From: "SUSAN GEERY" <geery@w...>
Date: Sun Nov 18, 2001 12:35 pm
Subject: Re: [quinolones] Mild Heart Attack at age 36 after 3 days of Cipro

My husband had the same thing happen. Cipro for food poisoning and then
CHF. Turns out he had a ruptured cordi tendeni which happened to be
attached to the portal of his mitral valve. Mitral valve became ineffective
and open heart surgery took place to put in a St. Jude valve. No bacteria
was found on the valve and amzingly enough 1 month prior to this incident he
had a thorough physical and was in great health. The cardiologist said he
could have been struck by lightning twice before this could happen to
someone. We have always suspected Cipro as being the culprit since my
husband endured breathing problems, uncontrollable coughing, tremendous
heartburn. By the way the food poisoning was later found to be
camplyobacter from the chicken wings. Too bad Bayer did not pull Baytril
from the poultry industry as did Abbott by FDA request. Cipro was
ineffective fighting camplyobacter when the strain was resistant to FQs.

From: <del.janet@j...>
To: <quinolones@yahoogroups.com>
Sent: Saturday, November 17, 2001 4:58 PM
Subject: [quinolones] Mild Heart Attack at age 36 after 3 days of Cipro

> I'm a happy stay at home mom who was prescribed Cipro for food
> posioning at the end of October. After 3 days of taking 2 300mg
> tablets a day, I had a heart attack at my son's Karate class. THe
> doctors are not willing to consider that Cipro was the culprite.
> However, they can find no health problems with me. I am not a smoker
> or drinker. My cholesterol and blood pressure has always been
> normal. After a heart cath and echo, no artery or heart problems
> were found. They are baffled. I'm not. After reading all the info
> from this site, I am convinced it was the Cipro. THe sad news is,
> they are still running more test, and I am stuck with two pills(blood
> thinners) per day until who knows when.
>
>
>

From: cshinn1@a...
Date: Sun Nov 18, 2001 6:12 pm
Subject: heart palpitations/leaky valve

I was diagnosed with an enlarged heart and leaky valve, too, at the
time of my ADR to Levaquin. I had had heart palpitations and the
internists I was going to wanted a cardiac scan and that was the
outcome. Also at the same time my blood pressure went up. My blood
pressure had always been "story book", until that time.
(that was in 2/98).
I went on a diuretic at that time, to bring my blood pressure down.

Then the beginning of this year I had heart palpitations
again...irregular beats, also. My internist here in Calif...wanted a
cardio-cat scan which showed same...enlarged heart/leaky valve, but
this time the work cardiomyopathy was put to it. I then had a stress
test with isotopes at the hospital.
Now I'm on an ace inhibitor and the diuretic. Under care of a
cardiologist.
Only upon my asking the cardiologist my last visit...about Sept this
year, did I find out that infact the enlarged heart had reduced in
size (good news) but the valve was leaking more.

I apologize for not knowing exactly how to spell all these medical
words correctly.

I often wondered if the heart problems and the Levaquin was
associated, since it occured at the same time, initially.



DATE: Mon, 19 Nov 2001 15:52:11
From: "Janine Cooper" <janine_cooper@a...>
To: quinolones@egroups.com

To whom it may concern:
I have been taking Levaquin 500 mg for 4 days now. I have experienced extreme
anxiety, tremors, hallucinations, and have had horrible nightmares. I have
been crying at the drop of a hat and have had to perform repeated actions such
as touching my face or running my fingers through my hair to just not go crazy.
I feel as if I am on cocaine, I can't stop moving and I am strung out.
Needless to say after I read the forum I am stopping the medicene today and
hoping my doctor will prescribe something else. I was given samples of this
drug for ten days with no explanation of the side effects or anything from my
doctor. I have been severely depressed for the past three days and have had
some paranoia. If you have any questions, please email me back.
Sincerely,
Janine Cooper


From: petek@m...
Date: Mon Nov 19, 2001 8:22 pm
Subject: Please, please.... Welcome me to your Hell

Hello to you all,

My name is Pete and from what I've read here, I've been floxed...
badly.

I want to be brief about my exposure because I'm sure it's a story
that has been told over and over. And I have questions that perhaps
some one of you can help.

In March of this year I was given 500 mg. of Levaquin prophylatically
before a prostate biopsy. Within 48 hours I was suffering tremendous
pain from head to toe. Best described as the worst case of the flu
imaginable. A Blood Screen picked up on a slightly elevated white
count and the docs assumed an infection. Naturally, a full week of
500 mg Levaquin was prescribed. I remember being sick for a month
but
not much else. I was constantly begging for painkillers and being
tsked,tsked, " it shouldn't hurt that badly." Eventually, I got
better.

On September 25 I had an emergency appendectomy, 500 mg Levaquin
prophylactically. 24 hours later head to toe pain. Another slightly
elevated white count at the ER, another week of Levaquin. Only this
time the bottom dropped out from under me. Hallucinations, tremors,
musle spasms, tendon pain, altered smell and taste, horrible,
horrible panic attacks, a horrific sensitivity to temperature
changes,
noise, bright lights, on and on. Eight days later the incision got
infected... so a Levaquin IV was ordered, naturally... Then another
week of those goddamned pills. 5 trips to the ER followed. CAT
scans, x-rays, blood tests, ad nauseam. And nada. It reached the
point that when the nurses in the ER saw me coming they just ran for
the morphine.

Its been 8 weeks now. I can't work (sorry thats a poor me) and the
doctor's are convinced that I'm just a dope fiend. It takes drugs as
powerful as Percocet to kill the pain. And now their refusing to give
me anymore.

I printed out Dr. Cohen's PNS article and other info I dredged off the
Net and gave it to my Doctor. His reaction??...
"Maybe, maybe not." I have a neurologist appointmnet for the 29th.
Seems like light years from now.

I've studied this as much as I possibly can. I'm taking Magnesium,
Glucosomine-Chondroitin, Vitamin B-Complex, Vitamin E, and Xanax for
the panic attacks.

There has been slight improvement but still the pain is with me
constantly... It kind of gets on your nerves (No Pun Intended.)

The biggest issue of course is to convince my doctor
that I have experienced an ADR. Is there no test to prove the PNS
damage? Does anyone have any advice about Pain Management? The
relief I get from painkillers makes this all seem like a bad dream. .

But then the pain returns...

Thanks for being here. Thanks for listening.... I see that there is
a lot of pain but a lot of care and compassion on this site. I wish
you all well.


Sincerely, Petek


From: Craig Muller <camuller@y...>
Date: Thu Nov 22, 2001 9:59 pm
Subject: I seek advice
Well, I am a card carrying floxer. I was prescribed a
10-day dose of Cipro for an upper respiratory
infection after Zithromax didn’t fully get rid of it.
I began getting panic attacks in the middle of the
night. At that time, I thought it was a heart attack,
with shortness of breath, chest tightness, tingling
throughout the body, electrical pulses, dizziness, and
hot spots on my head etc. I even called 911 once,
only to be told I was having an anxiety attack. My Dr.
also told me to take Ibuprofen, after I told him about
what happened. I have recently learned that is a no
no with quinolones.

After going through an EKG I phoned my Dr. after my
emergency room visit and he said I was having an
anxiety attack and prescribed Xanax. I immediately
searched out an internist as I knew there was no
reason for me to have newfound anxiety ALL THE TIME,
at a severely high level. Although I didn’t believe
it, I in fact was having anxiety attacks, but it
wasn’t from stress. It was from the Cipro. I then
switched PCP’s to an internist who suggested I go
through a chest CTscan (for pulmonary embolism), upper
GI (for esophageal tingling and burning), and blood
test, all that came back negative.

She then mentioned some colleges were recently
discussing the fact that people anxious over the
anthrax scare, were seeking out and taking Cipro,
without being exposed to it. The Cipro they were
taking was actually causing increased anxiety. Little
do they know what else it is causing. After I further
researched Quinolones, I found that my symptoms are
almost certainly from the Cipro.

It’s now been about 5 weeks since my last dose and I
still am having severe anxiety. Kava Kava was working
for a few days, but yesterday was particularly bad. I
actually filled the Xanax prescription, as I needed
something to get me out of this hell. Besides the
anxiety, I am also experiencing the feeling of “worms
crawling” under my skin, neck pain, strange tremors
under my breastbone, chest pains on both sides,
occasional minor electrical shocks (heart and chest),
Esophageal/stomach burning when leaning forward,
slight back pains, burning scalp, occasional ringing
in my head at night, and lethargy…

I am drinking a lot of water, and taking Milk Thistle
(to try to clean out my liver) and CoQ10. I don’t
know what else to try? The symptoms, especially the
chest pain, seems to be getting worse rather than
better. I really need some help to get through this
one. Can someone point me in the right direction?

Thank you-
Craig

From: ymsgr:sendIM?bdhanserymsgr:sendIM?bdhanser"Brian Hanser" <bdhanser@h...>
Date: Sun Nov 25, 2001 10:15 am
Subject: another Cipro / tendonitis incident
Folks,
I was amazed and astounded to find that so many other people have had the
same reaction to Cipro that I had. Here’s my story:
After a recent trip to Mexico I contracted a bout of “tourista” which just
wouldn’t go away, so I paid a visit to my family doctor. He prescribed a
5-day course of Cipro, which cured the diarrhea overnight, but also caused
my joints to start hurting the next day. At first I figured that this was
just “achy bones” associated with the stomach troubles I was having. (I am a
40-year old male with a history of moderate arthritis, which I control quite
well using a combination of exercise, stretching and Ibuprofen.)

But by day two my lower back, hip and knee joints were really hurting and
the Advil wasn’t doing a bit of good, so I went for a 30-minute walk and did
some stretching exercises. This seemed to make the problem worse. By day
three I was having trouble walking and getting in & out of bed, so I did
some research on the Internet and found the data sheet on Cipro, which
listed joint pain / tendonitis as one of the adverse reactions. I
discontinued taking Cipro and contacted my physician immediately. He didn’t
take me very seriously, but after some persistence on my part he finally
prescribed Vicodin for pain and Voltaren to reduce the inflammation. The
Vicodin reduces the pain (and thus gives me a sense of well-being) for about
2 hours at a time; the rest of the time I am in quite a bit of pain and
hardly able to function. The Voltaren seems to be working better than Advil,
but not much.
Two days ago I tried doing a little slightly-strenuous yard word, and this
caused the tendonitis to flare up a great deal, to the point of being almost
bed-ridden. This really sucks.
I have a few questions for the list:
Have any of you been given Corticosteriods to treat the inflammation /
tendonitis caused by the ADR from Quinolone antibiotics?

Are there other NSAIDs that have proven to be more effective than Voltaren?

Have other pain-relievers proven to be more effective (and longer lasting)?

Is there any evidence that people who are already afflicted with arthritis
are much more prone to an ADR to Cipro?

Am I going to miss the ski season this year because of this ADR, or will it
go away in a matter of weeks?

Any other insight or words of encouragement you may have to offer would
certainly be welcomed.

Best Regards,
Brian Hanser


From: ymsgr:2001toomuchpsi@h...
Date: Mon Nov 26, 2001 8:42 pm
Subject: Anxiety?panic attacks from Levaquin

I really cannot describe the pure hell I am in right now. I was taking
Levaquin for Prostatisis and was prescribed 500 ml for a month, and 250
ml for another month.. So I have been on the drug almost 2 months.
Last week I got a rash on my arm. I also noticed a tingling sensation
down my left side, and numbness in my hand and legs. This went on for
2 days and would come and go. Then this Friday night I had a huge
panic attack. Uncontrollable.. I thought I was losing my mind. I
immeditely stopped taking the Levaquin. For 3 days now I had had a
couple severe panic attacks a day. Also tingling, burning feeling
overcomes my body. I went ot the Uruologist today who prescribed it
and he said it was possible it is due to the Levaquin. I also went to my
regular doctor and he gave me some Paxil for the anxiety ,but it is not
helping.
I almost went to the emergency room tonight it is soo horrible. The
feeling of panic/anxiety for absolute no reason is unbearable. I am
having some blood work done tommorow and then the doctors will go
from there. But it seems that the doctors might not be able to help me
after reading this forum. As I type this I am having an episode.I pray this
will one day get better.



From: hotstocks123@h...
Date: Tue Nov 27, 2001 5:07 pm
Subject: Anxiety
I also have severe anxiety and saw every doctor. For 6 months I had
to use xanax also. I still have insomnia and can't sleep or wake up
in a couple hours without it. Beware, use it sparingly and only when
needed or you will get dependant on it and it is your only help for a
while. I am getting better after 2 years but my knees still burn and
I can't excercise at all or I am in pain/burning numbness for 3
months to 1 1/2 years after!


From: ymsgr:utchingshrhutchings@y...
Date: Wed Nov 28, 2001 6:23 am
Subject: Adverse Reaction to Levaquin

I was diagnosed with a bladder infection and prescribed Levaquin (10
day cycle)over the phone, as it was the day after Thanksgiving and
the office was closed. Since I was experiencing back and neck ache
associated with the infection, when my legs and arms started feeling
achy, tender and tingly a couple days later, I thought it was the
infection. I saw the doctor on the 4th day, complainging of the
achiness and pain, as well as recurring fever. He tested my urine
and said that I still had and elevated white count, so prescribed an
additional antibiotic, Augmentin. If I wasn't getting better, he
said to call in 2 days. The next day the achy and tingling feeling
in my legs was much worse and my skin felt like it had been burned.
I got on the internet this morning to look at the side effects of
Levaquin and found this message board and a couple of others. Many
of my complaints are of a similar nature to the people on this
board. I called my doctor and he told me to stop taking the
antibiotic, but seemed nonchalant about the apparent side effects
that I am experiencing, though he did say to call him if things
didn't get better. How long does it take for things to get better?
As I've also come to find out, I probably should not have been taking
Advil with it, though I was told to for the fever.

From: adnil@o...
Date: Wed Nov 28, 2001 1:31 pm
Subject: Re: Adverse Reaction to Levaquin
--I had a severe reaction to Cipro in February, 1999 and have been
fighting the effects since. These included CNS, PNS and muscle-
tendon problems. I have found that taking B-Complex helped the PNS
symptoms the most. That goofy, out of it feeling and muscle pain and
weakness were helped most by drinking lots of water and eating foods
high in potassium. GatorAide was a real help during some bad flair-
up, one of which the doctor said was MS-like. My tendon and joint
pains have gotten much better since my thyroid medication (Synthroid)
dosage was increased.

My TSH was in the high end of the reference range, so I wasn't
overtly hypothyroid, but an increase in T4 has helped my heal. I am
hypothyroid since having radioactive iodine to treat Graves disease.
I was fine in this department until the Cipro.

I have never taken any prescription medications for the ADR. The
only thing the doctors have tried to give me was Celexa (an
antidepressent). I know my symptoms were not depression.
Unfortunately, I have not found a doctor who believed me about the
Cipro ADR's even when I gave them reprints of journal articles to
substantiate my claims.

The good news is that after nearly three years, I am much better.
I sincerely hope that you don't have to wait that long to get relief.

Linda





From: Aha1361743@a...
Date: Thu Nov 29, 2001 10:52 pm
Subject: (no subject)

After 7 or 8 thirty-day doses of Levaquin over the last two and a half years
( for a chronic sinus condition) my feet are just killing me, and my new
doctor seems convinced that it was the Levaquin. Searing pain that comes in
waves. The doctor wants me to get physical therapy for my feet - to strecth
out the tendons and increase nmy range of motion. I am worried that it will
make things worse - because when I walk any distance I really pay for it in
terms of increased foot pain.

Any advice?

Andy


I spoke with my pharmacist today about Cipro and was told that those side
effects, eg, tendon problems, are very
rare. I had asked when I got the prescription 2 months ago about side effects
and was not told of any of those
discussed on this list.
Jeffrey ---------


From: Mary Templeton <flnolegirl@y...>
Date: Thu Nov 1, 2001 5:29 am
Subject: Severe pain and knot below left knee
Hi all,
I am in severe pain today. I was alright yesterday
and took my little girls trick or treating last night,
but today I woke up with pain upon flexing my leg and
knee and upon walking, also I have a knot on the side
of my left leg right below my knee. Could this be a
tendon or joint problem???? I was just wondering if
anyone has had a simaliar experience, and if so what
it could be. I have always been healthy somehow once
again I suspect that darned quinolone antibiotic I
took in July. Thanks to all of you who can help me!!!

Mary


From: sdorshan@a...
Date: Sun Nov 4, 2001 2:24 pm
Subject: Re: Levaquin - Oh, my legs!
>>>>I took my first Levaquin 500mg Oct. 30, 2001, at 2 in the afternoon.
Later that night, my left knee started hurting. Who would connect
knee pain with taking a pill? Oct. 31, 2001, at 3 in the afternoon,
I took my second and LAST Levaquin. After going to the Internet and
reading about Levaquin, I flushed the remaining 4 pills down the
toilet. By bedtime I could not bend my left leg at the knee. It
felt tight and swollen and hurt mainly in about a 6 inch span going
from my knee upward. My right leg started feeling the same way, but
not as badly. <<<<

Susan - this is exactly what happened to me after 1 Levaquin (except that I
had taken Levaquin, Floxin and Cipro before that without any problem). I
don't remember how long the pain lasted, but I'm pretty sure it was gone
within a few days. I have no lasting knee problems at all.

Just go easy on the legs, and give it a few days.

Scott


From: "Dorsa Warr" <lndwarr@p...>
Date: Thu Nov 15, 2001 10:29 am
Subject: oldster;
Hi group,
Just found this site after contacting Stephen Fried,, the father of this whole
research.... it was his article in the Philladelphia magazine,"less than one
percent" about the reaction his wife had to Floxin that brought about the
massive interest in FQ adverse reaction... he at the time was not aware that it
had happened to anyone else...he began receiving mail from people saying"me
to!!!"
This was in april of 1993
In Nov of 1993 I was given Floxin for a urinary infection... (which makes you
plenty sick to begin with..) I was given floxin and took it twice a day for
almost a week...what I could keep down anyway.... thanks to the vomiting it
caused I may have injested less that I actually swallowed....
I ended up in the ER 3 times that week with accute dehydration from a constant
103.5 fever....
finally the dr decided that it may be a reaction and took me off the floxin...
by then the bacteria in the kidneys was gone but all the side effect were
left....
I has been 8 years now and Im 57 year old female....
I still suffer from the effects,,,,
I dont want to discourage newbies.... but please dont ever fool yourself into
thinking someday you will be cured..... you will get better and you will learn
to live with the pain....
I didnt have the leg and achilles problem but I have had to have neck surgury
and wrist surgury, have a recently blown tendon in my shoulder and the other
side is acting up also..
8 years later ,,can it be blamed on floxin... I dont know... but I feel in my
heart it is...
everyday I hurt some where else.... rarely the same place... but it moves
around enough that I know it isnt a ",pulled muscle" from some sort of
activity..
Over the years I have tried every thing and "everything" has worked for a
little while..massage and hot tubs work well... but only temporary relief..

During the time I was taking floxin these are the symptoms I had...

fever 103.5 constantly
uncontrollable shakin
insomnia
accute pain all over,,muscle and skin...
metal taste and smell in mouth and nose
wide awake hallucinations
memory loss
aphasia (cant get the right word out)
accute dehydration
white blindness,,,cloudy visual distortions
chills constantly ..could not get warm..
could not eat
nausea
vomiting
extreme headache
confusion.(could not dial the phone)

symptoms 1 year later
anemia
low energy
aphasia
agitation-frustration
heart beats fast some times
depression
visual distortions...light flickers and movement ,seen out of the corner of my
eyes
tingling of hands and arms.
neck and back pain
fibromyalgia (drs..say)
headaches
memory loss

symptoms 3 years later
fribromyalgia
tingling if extremities
memory loss
back pain that moves around
visual distortions... flickers and movement seen from corner of eyes
inability to focus
depression..
agitation and frustration

symptoms 8 years later...
nothing has changed so my guess is that this is as good as it gets..
only now my shoulder feel like a tendon is being pinched between the joints and
snd shooting pains thru my arm and shoulder... had ex rays yesterday to find
out...
also in the last 3years my hips have become involved in the constant aching.

At that time Opra Winfrey did a show to draw attention to this as one of her tv
crew had experienced reaction to floxin...
a number of us tried to get something done and ran into roadblocks every
where.... money to fight drug companies is just not there ,, even
collectively.... plus at the time the governmnt had a protective umbrella over
the drug co's
I personally printed and copied everything I could find and mailed it to many
urologists in the Portland Ore area to try to spread the word.... who knows if
it ever got past the receptionist....I never got a reply...and to this day
every Dr I meet I ask if they are away of the effects of FQ... and sadly to say
the majority of them think Im nuts... and say they never have heard of
problems..
well.....now thanks to anthrax threat.... Im sure they all will know...
because of the wide publicized use of cipro recentlly... I was curious to know
if anyone was still aware of the problem... so I contacted Stephen Fried who
gave me this group address....
I must admit I have been out of the loop for many years... and did not even
know about the levequan ADR...
Im so sorry we could not do more to prevent this atrocity... in 1994... but I
assure you many of us did... to no avail. and finally we had to get on with our
lives and learn how to live with being Floxed....
Dont let any one tell you the drug companies dont know.... they do and they
dont care.. its all about money.
Omniflox was pulled of the market in just a few months because people died
right and left from it... so they created Floxin which didnt kill as many and
merely maimed them...but left the drug co..on better legal ground...
they keep improving the drug ..or changing the name should i say to make it
look like they are improving it.
On the insert in the floxin package (which I had to take to a copy store and
have it enlarged as the printing was miniscule)it says... can cause RENAL
failure..... thats kidneys..kids... and what are they giving it to most people
for..???? kidney infections..bladder infections.....!!!!! if that isnt a case
for malpractice..!!! but again ... only if you have money,,


Dr David Flockhart from Georgetown Univ. stated that FQ's were overkill... that
using them for ordinary infections was like hunting a fly with a shotgun.....
these drugs should only be given when all else has failed and you might die...
then it would be worth the risk of the FQ side effects.

But the good news is ....since the anthrax scare is so widely publicized ...the
word about FQ's will get out....
I encourage all of you to write your congress man... copy new reports and send
to your local hospitals...hand write to your doctor at his home... especially
those who have denied any connection of your symptoms with FQ'

Get the word out.... tell everyone that you know... especially those who are
pregnant and with children...

write the names of all the FQ's on the back of your business card and give to
friends and ask them to please show this to the pharmacist when they are
filling a rx and ask if its one of them...

My family and friends have had this put on their charts at the dr office and
school... no Fluroqunolones allergic... !!!!!
those who have lived with or around me are aware and have helped me with the
crusade..

E-mail others about it other than just this web group..
But keep on.... keepin on !!

Read stephens article in Philadelphia magazine..april 1993 "less than one
percent" and you will realize how long this has been going on...

Good luck
www.stephenfried.com
www.bitter-pills.com

here are 2 more web sites about FQ's and other drugs....

I think we have a chance now to be heard.... now that Cipro is on the lips of
everyone... and we will have a lot more victims with a voice...sadly..
thanks everyone...
dont get discouraged.... try everything... it all works at least a little..

Dorsa Warr
<mailto:lndwarr@p...>

From: "SUSAN GEERY" <geery@w...>
Date: Sun Nov 18, 2001 12:35 pm
Subject: Re: [quinolones] Mild Heart Attack at age 36 after 3 days of Cipro

My husband had the same thing happen. Cipro for food poisoning and then
CHF. Turns out he had a ruptured cordi tendeni which happened to be
attached to the portal of his mitral valve. Mitral valve became ineffective
and open heart surgery took place to put in a St. Jude valve. No bacteria
was found on the valve and amzingly enough 1 month prior to this incident he
had a thorough physical and was in great health. The cardiologist said he
could have been struck by lightning twice before this could happen to
someone. We have always suspected Cipro as being the culprit since my
husband endured breathing problems, uncontrollable coughing, tremendous
heartburn. By the way the food poisoning was later found to be
camplyobacter from the chicken wings. Too bad Bayer did not pull Baytril
from the poultry industry as did Abbott by FDA request. Cipro was
ineffective fighting camplyobacter when the strain was resistant to FQs.

From: <del.janet@j...>
To: <quinolones@yahoogroups.com>
Sent: Saturday, November 17, 2001 4:58 PM
Subject: [quinolones] Mild Heart Attack at age 36 after 3 days of Cipro

> I'm a happy stay at home mom who was prescribed Cipro for food
> posioning at the end of October. After 3 days of taking 2 300mg
> tablets a day, I had a heart attack at my son's Karate class. THe
> doctors are not willing to consider that Cipro was the culprite.
> However, they can find no health problems with me. I am not a smoker
> or drinker. My cholesterol and blood pressure has always been
> normal. After a heart cath and echo, no artery or heart problems
> were found. They are baffled. I'm not. After reading all the info
> from this site, I am convinced it was the Cipro. THe sad news is,
> they are still running more test, and I am stuck with two pills(blood
> thinners) per day until who knows when.
>
>
>

From: cshinn1@a...
Date: Sun Nov 18, 2001 6:12 pm
Subject: heart palpitations/leaky valve

I was diagnosed with an enlarged heart and leaky valve, too, at the
time of my ADR to Levaquin. I had had heart palpitations and the
internists I was going to wanted a cardiac scan and that was the
outcome. Also at the same time my blood pressure went up. My blood
pressure had always been "story book", until that time.
(that was in 2/98).
I went on a diuretic at that time, to bring my blood pressure down.

Then the beginning of this year I had heart palpitations
again...irregular beats, also. My internist here in Calif...wanted a
cardio-cat scan which showed same...enlarged heart/leaky valve, but
this time the work cardiomyopathy was put to it. I then had a stress
test with isotopes at the hospital.
Now I'm on an ace inhibitor and the diuretic. Under care of a
cardiologist.
Only upon my asking the cardiologist my last visit...about Sept this
year, did I find out that infact the enlarged heart had reduced in
size (good news) but the valve was leaking more.

I apologize for not knowing exactly how to spell all these medical
words correctly.

I often wondered if the heart problems and the Levaquin was
associated, since it occured at the same time, initially.



DATE: Mon, 19 Nov 2001 15:52:11
From: "Janine Cooper" <janine_cooper@a...>
To: quinolones@egroups.com

To whom it may concern:
I have been taking Levaquin 500 mg for 4 days now. I have experienced extreme
anxiety, tremors, hallucinations, and have had horrible nightmares. I have
been crying at the drop of a hat and have had to perform repeated actions such
as touching my face or running my fingers through my hair to just not go crazy.
I feel as if I am on cocaine, I can't stop moving and I am strung out.
Needless to say after I read the forum I am stopping the medicene today and
hoping my doctor will prescribe something else. I was given samples of this
drug for ten days with no explanation of the side effects or anything from my
doctor. I have been severely depressed for the past three days and have had
some paranoia. If you have any questions, please email me back.
Sincerely,
Janine Cooper


From: petek@m...
Date: Mon Nov 19, 2001 8:22 pm
Subject: Please, please.... Welcome me to your Hell

Hello to you all,

My name is Pete and from what I've read here, I've been floxed...
badly.

I want to be brief about my exposure because I'm sure it's a story
that has been told over and over. And I have questions that perhaps
some one of you can help.

In March of this year I was given 500 mg. of Levaquin prophylatically
before a prostate biopsy. Within 48 hours I was suffering tremendous
pain from head to toe. Best described as the worst case of the flu
imaginable. A Blood Screen picked up on a slightly elevated white
count and the docs assumed an infection. Naturally, a full week of
500 mg Levaquin was prescribed. I remember being sick for a month
but
not much else. I was constantly begging for painkillers and being
tsked,tsked, " it shouldn't hurt that badly." Eventually, I got
better.

On September 25 I had an emergency appendectomy, 500 mg Levaquin
prophylactically. 24 hours later head to toe pain. Another slightly
elevated white count at the ER, another week of Levaquin. Only this
time the bottom dropped out from under me. Hallucinations, tremors,
musle spasms, tendon pain, altered smell and taste, horrible,
horrible panic attacks, a horrific sensitivity to temperature
changes,
noise, bright lights, on and on. Eight days later the incision got
infected... so a Levaquin IV was ordered, naturally... Then another
week of those goddamned pills. 5 trips to the ER followed. CAT
scans, x-rays, blood tests, ad nauseam. And nada. It reached the
point that when the nurses in the ER saw me coming they just ran for
the morphine.

Its been 8 weeks now. I can't work (sorry thats a poor me) and the
doctor's are convinced that I'm just a dope fiend. It takes drugs as
powerful as Percocet to kill the pain. And now their refusing to give
me anymore.

I printed out Dr. Cohen's PNS article and other info I dredged off the
Net and gave it to my Doctor. His reaction??...
"Maybe, maybe not." I have a neurologist appointmnet for the 29th.
Seems like light years from now.

I've studied this as much as I possibly can. I'm taking Magnesium,
Glucosomine-Chondroitin, Vitamin B-Complex, Vitamin E, and Xanax for
the panic attacks.

There has been slight improvement but still the pain is with me
constantly... It kind of gets on your nerves (No Pun Intended.)

The biggest issue of course is to convince my doctor
that I have experienced an ADR. Is there no test to prove the PNS
damage? Does anyone have any advice about Pain Management? The
relief I get from painkillers makes this all seem like a bad dream. .

But then the pain returns...

Thanks for being here. Thanks for listening.... I see that there is
a lot of pain but a lot of care and compassion on this site. I wish
you all well.


Sincerely, Petek


From: Craig Muller <camuller@y...>
Date: Thu Nov 22, 2001 9:59 pm
Subject: I seek advice
Well, I am a card carrying floxer. I was prescribed a
10-day dose of Cipro for an upper respiratory
infection after Zithromax didn’t fully get rid of it.
I began getting panic attacks in the middle of the
night. At that time, I thought it was a heart attack,
with shortness of breath, chest tightness, tingling
throughout the body, electrical pulses, dizziness, and
hot spots on my head etc. I even called 911 once,
only to be told I was having an anxiety attack. My Dr.
also told me to take Ibuprofen, after I told him about
what happened. I have recently learned that is a no
no with quinolones.

After going through an EKG I phoned my Dr. after my
emergency room visit and he said I was having an
anxiety attack and prescribed Xanax. I immediately
searched out an internist as I knew there was no
reason for me to have newfound anxiety ALL THE TIME,
at a severely high level. Although I didn’t believe
it, I in fact was having anxiety attacks, but it
wasn’t from stress. It was from the Cipro. I then
switched PCP’s to an internist who suggested I go
through a chest CTscan (for pulmonary embolism), upper
GI (for esophageal tingling and burning), and blood
test, all that came back negative.

She then mentioned some colleges were recently
discussing the fact that people anxious over the
anthrax scare, were seeking out and taking Cipro,
without being exposed to it. The Cipro they were
taking was actually causing increased anxiety. Little
do they know what else it is causing. After I further
researched Quinolones, I found that my symptoms are
almost certainly from the Cipro.

It’s now been about 5 weeks since my last dose and I
still am having severe anxiety. Kava Kava was working
for a few days, but yesterday was particularly bad. I
actually filled the Xanax prescription, as I needed
something to get me out of this hell. Besides the
anxiety, I am also experiencing the feeling of “worms
crawling” under my skin, neck pain, strange tremors
under my breastbone, chest pains on both sides,
occasional minor electrical shocks (heart and chest),
Esophageal/stomach burning when leaning forward,
slight back pains, burning scalp, occasional ringing
in my head at night, and lethargy…

I am drinking a lot of water, and taking Milk Thistle
(to try to clean out my liver) and CoQ10. I don’t
know what else to try? The symptoms, especially the
chest pain, seems to be getting worse rather than
better. I really need some help to get through this
one. Can someone point me in the right direction?

Thank you-
Craig

From: ymsgr:sendIM?bdhanserymsgr:sendIM?bdhanser"Brian Hanser" <bdhanser@h...>
Date: Sun Nov 25, 2001 10:15 am
Subject: another Cipro / tendonitis incident
Folks,
I was amazed and astounded to find that so many other people have had the
same reaction to Cipro that I had. Here’s my story:
After a recent trip to Mexico I contracted a bout of “tourista” which just
wouldn’t go away, so I paid a visit to my family doctor. He prescribed a
5-day course of Cipro, which cured the diarrhea overnight, but also caused
my joints to start hurting the next day. At first I figured that this was
just “achy bones” associated with the stomach troubles I was having. (I am a
40-year old male with a history of moderate arthritis, which I control quite
well using a combination of exercise, stretching and Ibuprofen.)

But by day two my lower back, hip and knee joints were really hurting and
the Advil wasn’t doing a bit of good, so I went for a 30-minute walk and did
some stretching exercises. This seemed to make the problem worse. By day
three I was having trouble walking and getting in & out of bed, so I did
some research on the Internet and found the data sheet on Cipro, which
listed joint pain / tendonitis as one of the adverse reactions. I
discontinued taking Cipro and contacted my physician immediately. He didn’t
take me very seriously, but after some persistence on my part he finally
prescribed Vicodin for pain and Voltaren to reduce the inflammation. The
Vicodin reduces the pain (and thus gives me a sense of well-being) for about
2 hours at a time; the rest of the time I am in quite a bit of pain and
hardly able to function. The Voltaren seems to be working better than Advil,
but not much.
Two days ago I tried doing a little slightly-strenuous yard word, and this
caused the tendonitis to flare up a great deal, to the point of being almost
bed-ridden. This really sucks.
I have a few questions for the list:
Have any of you been given Corticosteriods to treat the inflammation /
tendonitis caused by the ADR from Quinolone antibiotics?

Are there other NSAIDs that have proven to be more effective than Voltaren?

Have other pain-relievers proven to be more effective (and longer lasting)?

Is there any evidence that people who are already afflicted with arthritis
are much more prone to an ADR to Cipro?

Am I going to miss the ski season this year because of this ADR, or will it
go away in a matter of weeks?

Any other insight or words of encouragement you may have to offer would
certainly be welcomed.

Best Regards,
Brian Hanser


From: ymsgrtoomuchpsi@h...
Date: Mon Nov 26, 2001 8:42 pm
Subject: Anxiety?panic attacks from Levaquin

I really cannot describe the pure hell I am in right now. I was taking
Levaquin for Prostatisis and was prescribed 500 ml for a month, and 250
ml for another month.. So I have been on the drug almost 2 months.
Last week I got a rash on my arm. I also noticed a tingling sensation
down my left side, and numbness in my hand and legs. This went on for
2 days and would come and go. Then this Friday night I had a huge
panic attack. Uncontrollable.. I thought I was losing my mind. I
immeditely stopped taking the Levaquin. For 3 days now I had had a
couple severe panic attacks a day. Also tingling, burning feeling
overcomes my body. I went ot the Uruologist today who prescribed it
and he said it was possible it is due to the Levaquin. I also went to my
regular doctor and he gave me some Paxil for the anxiety ,but it is not
helping.
I almost went to the emergency room tonight it is soo horrible. The
feeling of panic/anxiety for absolute no reason is unbearable. I am
having some blood work done tommorow and then the doctors will go
from there. But it seems that the doctors might not be able to help me
after reading this forum. As I type this I am having an episode.I pray this
will one day get better.



From: hotstocks123@h...
Date: Tue Nov 27, 2001 5:07 pm
Subject: Anxiety
I also have severe anxiety and saw every doctor. For 6 months I had
to use xanax also. I still have insomnia and can't sleep or wake up
in a couple hours without it. Beware, use it sparingly and only when
needed or you will get dependant on it and it is your only help for a
while. I am getting better after 2 years but my knees still burn and
I can't excercise at all or I am in pain/burning numbness for 3
months to 1 1/2 years after!


From: ymsgr:hrhutchings@y...
Date: Wed Nov 28, 2001 6:23 am
Subject: Adverse Reaction to Levaquin

I was diagnosed with a bladder infection and prescribed Levaquin (10
day cycle)over the phone, as it was the day after Thanksgiving and
the office was closed. Since I was experiencing back and neck ache
associated with the infection, when my legs and arms started feeling
achy, tender and tingly a couple days later, I thought it was the
infection. I saw the doctor on the 4th day, complainging of the
achiness and pain, as well as recurring fever. He tested my urine
and said that I still had and elevated white count, so prescribed an
additional antibiotic, Augmentin. If I wasn't getting better, he
said to call in 2 days. The next day the achy and tingling feeling
in my legs was much worse and my skin felt like it had been burned.
I got on the internet this morning to look at the side effects of
Levaquin and found this message board and a couple of others. Many
of my complaints are of a similar nature to the people on this
board. I called my doctor and he told me to stop taking the
antibiotic, but seemed nonchalant about the apparent side effects
that I am experiencing, though he did say to call him if things
didn't get better. How long does it take for things to get better?
As I've also come to find out, I probably should not have been taking
Advil with it, though I was told to for the fever.

From: adnil@o...
Date: Wed Nov 28, 2001 1:31 pm
Subject: Re: Adverse Reaction to Levaquin
--I had a severe reaction to Cipro in February, 1999 and have been
fighting the effects since. These included CNS, PNS and muscle-
tendon problems. I have found that taking B-Complex helped the PNS
symptoms the most. That goofy, out of it feeling and muscle pain and
weakness were helped most by drinking lots of water and eating foods
high in potassium. GatorAide was a real help during some bad flair-
up, one of which the doctor said was MS-like. My tendon and joint
pains have gotten much better since my thyroid medication (Synthroid)
dosage was increased.

My TSH was in the high end of the reference range, so I wasn't
overtly hypothyroid, but an increase in T4 has helped my heal. I am
hypothyroid since having radioactive iodine to treat Graves disease.
I was fine in this department until the Cipro.

I have never taken any prescription medications for the ADR. The
only thing the doctors have tried to give me was Celexa (an
antidepressent). I know my symptoms were not depression.
Unfortunately, I have not found a doctor who believed me about the
Cipro ADR's even when I gave them reprints of journal articles to
substantiate my claims.

The good news is that after nearly three years, I am much better.
I sincerely hope that you don't have to wait that long to get relief.

Linda





From: Aha1361743@a...
Date: Thu Nov 29, 2001 10:52 pm
Subject: (no subject)

After 7 or 8 thirty-day doses of Levaquin over the last two and a half years
( for a chronic sinus condition) my feet are just killing me, and my new
doctor seems convinced that it was the Levaquin. Searing pain that comes in
waves. The doctor wants me to get physical therapy for my feet - to strecth
out the tendons and increase nmy range of motion. I am worried that it will
make things worse - because when I walk any distance I really pay for it in
terms of increased foot pain.

Any advice?

Andy