April 2004 Post Marketing Report

From: janjellygoo <kamikaze2010@h...>
Date: Thu Apr 1, 2004 0:15am
Subject: Some suggestions to help me get back to "normal" would be apreciated about now.
Hello. I posted an introduction thread here:
http://health.groups.yahoo.com/group/quinolones/message/18312
I'm basically at a stand still in my condition (no better no worse,
but always bad!) and am desperate to get better(as this is now the
start of my forth year of being in pain for Cipro). I know it's a
long shot, but if anyone can suggest anything for the inflammation
then that would be great.
And I've heard some people mention something about "flushing the
toxins" and detoxification.
If you can help, I'd appreciate it.
And goodluck to you aswell.


From: jeanhanna212 <jeanhanna212@y...>
Date: Thu Apr 1, 2004 1:26am
Subject: sharp back pain
Hello
I started to get worse back pain lately. The pain seems to come from
my spinal cord only. It feels like a sharp burning pain that goes
straight down the middle of my back. Has anybody else had this type
of localized pain? I am still terrified that I might have MS. I did
take 2 weeks of Levaquin and Cipro prior to the onset of my
symptoms.


From: waite1954 <Waite85@m...>
Date: Thu Apr 1, 2004 2:59am
Subject: Re: Keflex
Hi, friend I know exactly what your going through, And I'm not just
saying this. It was May 13,2000 that I went to the ER at V.A.
Hospital, I was feeling flu like symptoms and was sent for the x-rays.
When the Dr. made it to my room he looked at the x-rays and said That
I had a mild infection, he then asked me what antibiotics do I take
when I get sick? I replied loud and clear KEFLEX then he said that
he wants me to try this new and stronger drug called "LEVOFLOXACIN"
500MG one a day for 10 days. I kept telling the Dr. that I did not
want them. Then on May19, 2000 I went back to the ER with my mouth
and throat covered with 100-150 blisters. Then all of sudden while I
was in a room with about 4-5 doctors my scrotum and penis started
burning so bad that i started to scream in PAIN. Then my penis turned
completely black and burned to a crisp, my penis started to drip off
burned skin, blood and pus, the same thing happened to my scrotum. My
eyes started burning & pus was oozing from them both only for about 4
days then they cleared up.
So Friend my heart really goes out to you and your family and
my prayers are said every day for all of the sufferers from this
Terrible,Terrible so called "MACHO ANTIBIOTICS". I have been
married almost 24 years and now I can't even sleep in the same bed
because I have an implanted Morphine Pump and afraid of getting
kicked or even bumped. I'll never be able to make love again because
Levfloxacin burned all my nerve endings in my penis and my mouth.
I would welcome a call at 216-534-5346 just to chat and maybe
we could give each other information on differant kinds of medicine
that works for this and not for that. You can call and I will call
back so I can take care of the charge. Or you can send me a number. I
was on Social Security when I got this (Stevens Johnson Syndrome).
but taking a cut like you have to has got to be devastating. I'm
fortunate that I live in a chinese neighborhood and my mother-in-law
only charges us $300.00 a month. That depression must be terrible and
to loose everything on top of that I would be willing to have a
raffle to help you's, and I know that it wuoldn't do anything for the
depression. I sitting here typing and having tears in my eyes just
thinking about what this fellow is living with and the same for the
caregiver (you can just ask my wife). Well I'm going to sign off I
think I've bored you enough. I am not a religous person although I'm
catholic (just not a good one YET) You and your Family are now going
to have about a dozen more PRAYERS said.
Thanks for sharing your story
"Peace" and MAY GOD BLESS you all
Ernie & Pam (caregiver)

From: John Edward Roe <angelbab@s...>
Date: Thu Apr 1, 2004 3:53am
Subject: Fellow Sufferer
Hi, All-It has been awhile since I have written in, so thought after having kept up with the entries you all have been making, I felt I should stay in touch.
I'm the gal who has been suffering from both Cipro and Levaquin since 2000 also. My first episode was a torn plantar fascia as well as a ruptured achilles tendon in my right leg-then the left one-wore casts and "boots" for about a year, and then got a bit better, just to be given the drugs again, not knowing what the cause was. I managed to get by until last July, 2003-when the achilles tendons began going again. So, back in air casts until about a month ago. I also began having worse pain in my left shoulder area, swelling, and difficulty raising my arm. I had previously had rotator cuff surgery on the same shoulder about 7 years ago, and got along fairly well, actually-this was before quinolones, or at least I think so.
I began coming down with a respiratory infection just after Christmas this past year, and was put on a dose pak of Zithromax, and wouldn't you know it, my symptoms got so much worse and the swelling increased dramatically-so much that my Physical Therapist and my orthoped both were amazed at the change in about 48 hours. More MRIs were ordered, and then I was transferred back to orthopedic surgeon who had done my rotator cuff surgery, and he immediately scheduled surgery, which I had the end of January-rough, rough, rough! And, then I went to two other orthopedic surgeons in St. Louis (we live in mid-Mo.) for their take on my achilles tendons. Both agreed I should not have surgery-too much of a risk, I guess. My general orthopedic doctor says to keep the casts, and to put them back on whenever my legs hurt (which I deal with daily, except that I have not used them for about a month now.). She believes they will continue to rupture and one day we will be forced to do something,
but for now, just conservatively treat them. I had been put on predisone about a year ago, (am no longer on it, and refuse to take it again!), and have been a long term user of not only steriods, but anti inflammatories, so I too suffer from GERD, as well as the weight gain issue. I need to lose about 30 more pounds, but it is so hard. I also have had two back surgeries, am degenerating, and dealing with that pain as well. I managed to also develop a blacking out problem with rectal spasms, and fell last year and fractured my tailbone and hit my head on the sink in the bathroom late one night, and then fell again on the way back to bed-have only had a couple more incidents that are that bad since then, but occasionally, have had other times when I have felt it coming on, but used deep breathing techniques to stop it. I have medication that I am to take when I have a spasm coming on, so far haven't had to use it.
I would strongly recommend that anyone who has been damaged by these drugs to think very hard before having surgery-my ortho surgeon who had done the shoulder surgery, told me last week at the follow up visit that it will take 9 months to a year to get "back to normal" with my tendon issues-I am unsure if I would have had this surgery done had I known the recuperation time was so long and that I'd still be hurting so much these almost 2+months since surgery. And, this was done arthriscopically, with tiny slits!
As far as our problems are concerned-everyone is right-they cycle, and when they cyle is bad, it is really bad! I too have fibromyalgia, as well as arthritis, and have been tested for MS -which is always negative. Interestingly enough, however, I sell real estate, and a fellow agent has a wife who was given a flu shot for the swine flu several years ago, and she developed MS from it! She now has had strokes, and is nearly total care-with only one side of her being able to use, but she cannot even roll over in bed alone. They are in their 70's, and he takes such good care of her, but he has had 2 open heart surgeries, and nearly died himself, so they really have their hands full. They both are true inspirations, though-and very good Christians, and very devoted to one another. Makes me glad that I too have a wonderful devoted husband who has been so good to me too.
For at least the last year and a half, I have deteriorated so much in what I can do and what my life is like that it is amazing...and yet, there seems to be no remedy for us. I also had one of the surgeons tell me that yes, he agreed about the drugs causing these reactions-said is is very rare (ha, seems like an epidemic to me when I read every day of more of our fellow sufferers!)-anyway, the doctor said his partner in practice had the reaction with his achilles tendon rupture too. But the same doctor says that he right then was taking levaquin and had no problems.....um, makes you wonder, doesn't it? I'd sure like to follow him in a few years just to see.
Sorry this post is so long....and, has anyone heard from Dave Fuller on the site lately? I haven't and was wondering....I pray one day we can get some relief, and some compensation for all we've been through and what lies ahead.....God bless.....NR

From: waite1954 <Waite85@m...>
Date: Thu Apr 1, 2004 7:02am
Subject: LEVOFLOXACIN
Hi, my name is Ernest Waite I am 49yrs.old married for almost 24yrs.
I have 3 children son 8, son 19, daughter 22, wife Pamela 42. I am
writing you to see if there is any chance I could use your services,
Let me explain just what happened. In May of 2000 I went to the V.A.
emergency room because I was having flu like symptoms for about 2days.
When I left the hospital I was given Levofloxacin for a mild
infection. Before he give me the Levofloxacin I must have told the ER
Dr.that I did not want to try anything differant than Keflex, because
Keflex has worked for me for the past 30+ yrs. so why fix it if it
isn't broke. The Dr. and I went at it for about 15min. because at
first he asked me what Antibiotics have I taken for infections and I
replied Keflex at least a dozen times. So after taking Levofloxacin
for 7 days I started breaking out with about 100-150 blisters inside
my mouth and down my throat. When I went back to the ER I was taken
immediatly into a room and within 2 minutes there must have been 4-5
doctors looking over me trying to figure out what was happening. Then
I started to hear words like Behcet's Disease, Stevens Johnson
Syndrome, Crohns Disease and the whole time their talking I am
burning from the inside out. All of a sudden I started screaming in
PAIN and I looked down at my privates and my penis and scrotum are
turning charcoal black with blood and pus oozing from them. Then the
skin started to slough off. I was then admitted for the next 21
days. I was immediatly hooked up to a Morphine Dilaudid drip. I was
then Diagnosed with SJS. Before going home I had surgery to have an
epidural to take home (epidural is a procedure that a tube is coming
out of my abdomin and connected around my spine. For the next 3
months the V.A. set me up with a nurse that would come over every 4-5
days to change my epidural bag of Morphine and Bupivacaine, the
bupivacaine was sometimes numbing my penis. My Rheumatologist said
the Levofloxacin burned my nerve endings in my mouth and penis. then
on August 29, 2000 I went back to the Hospital for another surgery to
implant a morphine pump in my abdomin (permanent), I now have to go
every 6-7 weeks to get my pump refilled. I am also on oxycontin for
the terrible burning in my mouth. My mouth and throat feel like a
flame thrower most of the time. Without the Pain medication I
wouldn't be here now, I have been seeing Rheumatologist at least once
every two months, Dermatologist I have been seeing once a month,
Psychiatrist once a month, Pain Management once a month,
Opthamologist 2x a year, Pain Medication classes 10 days a year to
keep updated on whats new and save, Spinal cord Doctor fills up my
Morphine pump every 6-7 weeks. I have been reading up on these
Quinolones and I think that we should go after the company that makes
LEVOFLOXACIN.



From: Debra Morse <debm@c...>
Date: Thu Apr 1, 2004 7:13pm
Subject: Re: GERD
In my case it was 7 months after being floxed with Levaquin that I developed
symptoms of laryngo-pharyngeal reflux which is similar to GERD except that the
acid doesn't stay in the esophagus but actually comes all the way up the throat
and into the mouth. I started having incredibally heavy sinus drainage, a sore,
raw feeling throat and a terrible burning feeling in my throat and mouth. I
was given Nystatin and Guafinesin by my GP to calm the burning and to thin the
drainage (I couldn't even lie flat of my back at night because I would get strangled
on the drainage it was so heavy!). Unfortunately, neither of these worked really
well. It wasn't until I saw an ENT that I was diagnosed with laryngo-pharyngeal
reflux. He said that in the last two or three years they had discovered this
condition (as well as GERD) could cause sinus problems. He started me on Nexium
and within two days my sinuses had started to clear up! I also spoke with the
ENT about Levaquin and the fact that I thought it might be the root cause of
this (and other physical problems) of mine and when I left his office that day
he was actually on his computer logging into PUBMED to do some research on it!!
The next time I saw him, he agreed that quinolones CAN certainly be dangerous
drugs in some patients!
Wish he'd quit being an ENT and go back to general practice (which he used to
do). God knows we need more doctors like him who are willing to actually LISTEN
to their patients and be open minded to things instead of so many little white-coated
Gods who get highly p***ed if the patient dares question them on anything!
Debra
Wildreader2000

oh well in my case i had a gastroscopy and there was evidence of long term GERD
as in years.. it just that the Vioxx kicked the symptoms into high gear.. i've
had sore throats and cough for a long time and never made the connection because
i never had heartburn until the vioxx..


From: jennyboychuk <jennyboychuk@y...>
Date: Fri Apr 2, 2004 8:43pm
Subject: Just found out I had also taken oflaxacin and Macrobid
Hi all, I joined this site a week ago. Took Cipro for 3 days 6 weeks
ago and have excruiciating pain my both shoulders and bad pain in my
left elbow. I took the cipro for a UTI. Well I had a UTI 2 years
ago also and my doc just told me that for that one I took 5 days of
Macrobid and x days of oflaxacin (she didnt tell me how many but it
was probably 3-5). Weird thing is I had NO side effects 2 years ago
from those quinolones. I wonder what changed between now and then
that I reacted to the Cipro. My inflammatory blood tests all came
back negative so I was happy about that. My doc says that it can
take several months for the teninopathy to go away, so I suppose I
just have to bear it until then. No golf, bowling or gardening until
it goes away because I just can't do it. As it is I am just making
it to work and back each day because to me that is the most important
thing. I just started this job in February and have been told I will
go perm with disability benefits, etc end of May, so no way will I
drop out of here. I am just glad it hasnt affected my lower tendons--
which surprises me and my doctor. And even though it hurts my elbow
and shoulders a bit more, I am still walking 4x a week for 55 min at
lunch--I refuse to give that up!
Anyway, take care all.

From: build_it95 <build_it95@y...>
Date: Fri Apr 2, 2004 10:56pm
Subject: Re: Just found out I had also taken oflaxacin and Macrobid
Many times a body has no reaction on the first course of quinolones,
a great number of times ( I'm not sure but it may be more than 50% of
the time) the second course months or even years later is the one
that gets you.

From: mta <spiritmed@r...>
Date: Sat Apr 3, 2004 0:36am
Subject: Re: Re: Just found out I had also taken oflaxacin and Macrobid
got me the second time around, althugh the first got
my tendons a little, but i never made the
association...

From: tomleeseafood <tomleeseafood@y...>
Date: Sat Apr 3, 2004 6:07am
Subject: Why and how to de-toxify??
I suffered an ADR from ofloxacin and an NSAID. Symptoms usually get
worse in the early am hours when I suffer (among dozens of things)
intense waves of cranial pressure and blinding 'electrical shocks' to
the brain.
I've read that the symptoms of CNS excitation are caused by the
inhibition of certain CNS receptors... does this mean the quinolone
is still locked up in the tissues?
If the drug is still inside, how can it be flushed out?
Does anyone know what causes the symptoms to worsen at certain
times? Is there any relation to meals or sleep?
And finally, has anyone fully recovered from a flouroquinolone ADR?
Thanks,
Tom

From: Emajoe Abeln <emajoe_abeln@m...>
Date: Sun Apr 4, 2004 4:20am
Subject: RE: your story
My problem started in 2001 I took Cipro for 10 days for an infection and
after that I had pain and swelling in the ankle which seemed to gradually
move up to my back then pain and tremors in my arm all on the left side. I
then had tequin and levaquin for another infection during the winter of
2002-2003 for 6 weeks and all of problems got worse. Both legs got stiff
and I could barely walk. The neuropathy on left side got worse with pain in
all of the joints on my left side. I've also had sever panic attacks and
insomnea. I've been tested for everything and have not been given any
diagnosis.


From: chiggins1066 <chiggins1066@y...>
Date: Wed Apr 7, 2004 3:12pm
Subject: Avelox/Levaquin side-effects -help!
I've looked all over the web, and I've found only tiny amounts of info
about these drugs.
I was given 14 days of Levaquin in January, and 18 days of Avelox in
March to treat a nasty sinus infection. On my 14th day of Avelox, I
noticed pain in my calves and wrists, along with tingling "pins and
needles" sensations in the hands and fingers. Sometimes it's like an
itching feeling, and it's worse int he morning.
My doctor took me off the Avelox. The pain in tha calves and wrists
pretty much subsided, but the tingling "pins and needles" sensation is
still in my hands and fingers -like carpal tunnel syndrome.
Has anyone here had this side-effect? Does it go away? If so, how
long doe it take?


From: <SRo2930269@a...>
Date: Wed Apr 7, 2004 1:53pm
Subject: Re: Avelox/Levaquin side-effects -help!
I haven't posted in a while, but I monitor board every day. Regarding
pins/needles effects in the hands (and feet), that adr is STILL with me after 16
months post Levaquin....everday!! And that is the "only" significant lingering
adr. I do notice that when I increase dairy food/caffein sodas, I'll actually
have a flareup of pain "jabs" in calf, feet, abdomen, as well as
"prostatitis"-like symptoms that last a few days only. Yes, cold hands/feet is biggest daily
problem....it ONLY goes away if temperature is 60 degrees or warmer. Best of
luck to you. Shybasset

From: chiggins1066 <chiggins1066@y...>
Date: Thu Apr 8, 2004 1:16am
Subject: Re: Avelox/Levaquin side-effects -help!
That's interesting.
How long were you on Levaquin?
I was on both Levaquin and Avelox, and to make matters worse, I was
on Prednisone as well. These symptoms didn't start until very late,
after I had finished the Prednisone and I was almost through the
Avelox. I remember sitting on the couch and feeling an aching pain
at the base of my thumb, and my hand went cold. A day later, I felt
pain in my calves and "pins and needles" in the hands.
My dermatologist said this was neuropathy.
I'm very suspicious of the Avelox and Levaquin. And I continue to
have these hand problems. I can even notice small red dots in my
palms sometimes, which seem to come and go. I don't know if that is
related.


From: yvonne_grundy <grundy@u...>
Date: Sat Apr 10, 2004 0:31am
Subject: tremors/pain on one side
Has anyone out there experienced a reaction to a quinolone that has
begun on just one side of the body (primarily in the form of tremors
and possibly pain)? If so, has it then spread to the other arm, leg,
etc. or remained on the original side? Also, has anyone experienced
a curling under of the toes on one or both feet? If so, when does it
occur, does it come and go, do you experience pain in the foot (feet)
as well?
Thank You

From: vmuleus <vmule@c...>
Date: Sat Apr 10, 2004 0:13pm
Subject: Re: Overall reported rate of adverse events to quinolones
Dear Dr. J:
I am quinolone vicitm disabled for over 6 years now. Yes there are
searchable databases. I have the old AERS databse from 1967 to 1996
which was called SRS. I have the data in ASCII format in which you
can construct what are called Medwatch reports in the FDA's present
AERS database. AERS started in 1997 and ias the FDA present post-
marketing surveillance database. When patients experience an ADR,
they can file a Medwatch with report FDA which gets put into the
AERS databse. Meddra reports, which are summaries or qeuries of the
AERS database give summaries of Types of ADR's for a particular
drug. Meddra are available from FDA thru FOI. What I am trying to
obtain is the electronic format of the entire AERS databse (1997
thru present ) which is available from NTIS and each year comes on
one CD-ROM and each CD-ROM costs about $400. I and another FQ
vicitm split the cost of the SRS databse which is available from
NTIS for $200 and that has every quinolone ADR report from 1962 to
1997.
I am presently running the analysis on the SRS databse and
developing a SQL and Access databse system to run comparative
analysis.
Myself and other FQ victims have made estimates of FQ ADR;'s from
the Meddra reports for 1997 to present. When adding up ADR's for a
particular drug, one has to sift thru the roughly 30 pages of
reports for a drug using the Meddra forms and pull out the types of
ADR's and then add them up. For example, using Ciprofloxin as an
example and peripheral neuropathyy ADR's, peripheral neuropathy is
listed in Meddra as an ADR and has 58 incidences from 1997 thru
2003. However, one must also add in polyneuropathy which has 30,
neurological disorder which has 41, parastesia whcih has 99
incidences etc, etc,. For peripheral neuropathy related ADR's
reported to FDA from 1997 to 2003, alone there were roughly 80
different names or indications for peripheral neuropathy that were
reported in the Meddra report for Cipro from 1997 to 2003. The totla
counts I came up with is for peripheral neuropathy related ADR's is
715 for the 1997 thru 2003. Keep in mind that FDA estimates that
these reports account for only 1 percent of the total ADR's occuring
so the 715 PN related ADR's accounts for only 1 percent. An
estimation with the other 99 percent included gives, 71,500
incidences of PN related ADR's for just Cipro over a six year
period. Other have also done the same thing as I so I don't know at
this point how accurate I am. I have done the same analysis for
Muscle/tendon ADRs, Arthralgia related ADR's, Paralysis related
ADR's, Cardiovascular, CNS, Hepatic, Renal, Optic and Aural related
ADR's occuring from Cipro, Levaquin and Floxin.
I just tried to import a spreadsheet of the number estimates for
Cipro, Levaquin and Floxin but it didn't look to good.
I can email to you this chart as well as all kinds of data I have. I
also have the product number and all the info on how to contact NTIS
to get hold of the CD-ROMS that have the entire AERS databse
available. I will just type a few summaries of estimates for you
here.
muscle/tendon related ADR's Levaquin, 473, Cipro, 480 estimating for
the total ADR's that actually occur both (reported (1 percent)and
unreported (99 percent)) divide the number given for 1 percent
by .01. For example, for Levaquin, there were 473 muscle, myalgia
and tendon related ADR's that occured over a six year period, divide
by .01 and you get 47,300 muscle related ADR's for Levaquin over a
six year period. From some limited studies I estimate that 30
percent of these ADR's are long-lasting and or permanent. So over
six years, 47,300 estimated patients who experienced
muscle/tendon/myalgia related ADR's, 30 percent or 14,190 have not
recovered after 1 year.
I may try to fit my charts and estimates into another post. There is
just way too much to type. You have to see the individual breakdowns
of all the indications that I have grouped by class and then added
into a spreadsheet program. I would be happy to email to you as an
attachment this data, my email is vmule@c...
You may want to put your phone number in an email and i can talk via
telephone if you wish. I have been working with others and the hope
is to make this data available on the net but it takes alot of time
and work.
Sincerely Vince M

From: vmuleus <vmule@c...>
Date: Sat Apr 10, 2004 1:31pm
Subject: Re: Overall reported rate of adverse events to quinolones
Dear Dr. reynolds:
I made a mistake on the numbers I put up in my recent post. I had
around 400 something counts fro Cipro for Tendon, muscle and myalgia
related ADR's. That number was actually the number of deaths which
was 480 for Cipro from 1997 to 2003. The number of muscle/tendon and
myalgia related ADR's is estimated at 1,312 incidences for Cipro
over 1997 to 2003. That number which was derived by adding up all
the muscle related ADR's listed in the Meddra report for Cipro
represents according to FDA 1 percent of the total. So 131,200
estimated muscle/tendon and myalgia related ADR's are estimated to
occur for Cipro over a 6 year period. Assuming 30 percent of
131,200 of those ADR's have not resolved and are longterm/permanent
I get 39,360 permanent muscle/tendon ADR's from Cipro for the period
of 1997 to 2003.
Dr. Reynolds, it is imperative for anyone who wishes to review the
data and estimates that I have done, to look at the spreadsheets
that list all of the types of ADR's that were grouped into these
respective classes to arrive at the above said numbers. Since there
are again roughly 100 to 140 different types of muscle, tendon,
myalgia related ADR's alone listed in the Meddra reporst, the person
anlayizing the data has to see how one arrives at these numbers.
In addition, I am sure there are errors in my numbers as I had
talked to other whpo have done the same thing and although we are in
the ballpark, the numbers are not exact. Alot depends upon how one
catagorizes and ADR listed in the Meddra reports.
Again, I would be happy to email you the spreadsheets which are in
Excel format. The Meddra reporst I only have in hard copy as I had
to FOI FDA for those but I would be happy to photocopy them for you.
Hopefully,I wish to obtain the entire AERS databse on CD-ROM and
then import that into my SQL server databse and use MS Access as the
front-end query program. My email is vmule@c...
Vince M

From: rickfinn123 <rickfinn123@m...>
Date: Sat Apr 10, 2004 7:44pm
Subject: My short story
A single 500mg dose of Levaquin got me four days ago. Luckily for me
problems got critical BEFORE my 2nd scheduled dose.
the list of important symptoms:
chest pain
tachicardia- racing heart (p)
heart palpitations
difficulty breathing (p)
seeing "movies" when closing eyes (p)
jumbles of thoughts flashing through mind (p)
severe sleep problems
seem to stop breathing upon falling asleep (p)
eyes not working quite right
apparent memory problem
difficulty concentrating
fleeting muscle, tendon pains (p)
The (p) means past, symptoms that have stopped or nearly stopped.
From reading previous posts I realize how very luck I have been.
Can anyone tell me if I will experience new symptoms down the road,
or is the extent of my problems?


From: kristen harding <krissy@e...>
Date: Sat Apr 10, 2004 8:36pm
Subject: Re: Avelox/Levaquin side-effects -help!
--- In quinolones@yahoogroups.com, "chiggins1066"
<chiggins1066@y...> wrote:
> Krissy,
>
> how long did you suffer from the neuropathy? Was it mostly in
your
> hands?

I am starting year two. I have critical care poly neuropathy and its
in my arms/hands and legs/feet.
Krissy



From: chiggins1066 <chiggins1066@y...>
Date: Sat Apr 10, 2004 11:57pm
Subject: Hives?
I think I have developed an adverse reaction to Avelox (I was also on
Levaquin). On day 13 of taking the drug, I had some pain in my
calves and wrists, along with "pins and needles", especially in the
hands and fingers.
Another weird thing, is I developed a rash or hives on my palms.
Sometimes it looks worse than on other times. One poster indicated
that she had some red spots as well.
I'm confused and scared. I don't know what's going on here.
Allergic reaction to the drug (I stopped taking it 9 days ago)? Has
anyone else seen this?

From: chiggins1066 <chiggins1066@y...>
Date: Sun Apr 11, 2004 3:17pm
Subject: Re: Tiny Red Rash
This is an old post, but I will respond to it.
I get the strange rash on the palms of my hands along with the pins
and needles, numbness, and even dull aching in the wrists. I don't
know what to make of it. It looks like atopic dermatitis or possibly
a mild hive of some sort (I posted on this earlier).
So far, most of my symptoms have been in the hands (90%+). But I
depend on my hands to do my job! If anyone else has seen these
strange, small red dots, almost like a small hive breakout, let us
know.


From: chiggins1066 <chiggins1066@y...>
Date: Sun Apr 11, 2004 3:23pm
Subject: Re: Does it get worse?
I've suffered from major depression and anxiety since January (when I
was put on 14 days of Levaquin). Later, in April, I was put on 18
days of Avelox, including 2 days IV (and I don't even know what was
in the IV. Might have been Floxin..)
I was worked up and upset over my sinus condition, but since getting
my ADRs, I've basically gone of the deep end, with complette
meltdowns, suicidal thoughts, panic attacks, the full gambit.
You're not alone.


from: tomleeseafood <tomleeseafood@y...>
Date: Tue Apr 13, 2004 0:18am
Subject: Why are nights worse? Cycling
I'm usually ok during the day (mostly just back and joint pains), but
late at night I get waves of CNS activity like brain edema, intense
ear ringing and painful "electrical" brain jolts. Sometimes these
waves last up to 6 hours. I am not on any medications- still trying
to just cope. Does anyone know what stimuli trigger these attacks
and do you have any non-prescription solutions to alleviate the pain
or duration?
Also, any theories what causes monthly cycling? If it's caused by a
periodic release of FQ's into the bloodstream, then one would expect
the flare ups to diminish over time, but it seems this is not always
the case.

From: chiggins1066 <chiggins1066@y...>
Date: Tue Apr 13, 2004 4:48pm
Subject: Update
As many of you know, I recently put up some posts regarding an ADR to
Avelox/Levaquin.
I went to my GP on Monday to get checked out. My symptoms up till now
have been
1. Paresthesia in the hands and fingers. Occassionally in the feet,
but 95% in the hands.
2. Numbness in the hands at night while trying to sleep (carpal tunnel).
3. Aching in the calves.
4. General aching feelings, with fatigue.
5. A rash on my palms.
6. Extreme Anxiety -enough to put me in the hospital one night. I
basically had a mental meltdown. I don't feel "right."
7. Termination Insomnia. I wake up 3 times a night, and always at
4:30am. Probably a bi-product of my hand problems.
Since my GP teaches clinical pharmacology, he immediately suspected
the Avelox. He did a comprehensive exam, took a bunch of blood, etc.
He was most concerned about the rash, thinking it could be a mild form
of Stevens-Johnson Syndrome. He wants to see me on Friday to make
sure nothing else is happening.
I should note that there was no reluctance on his part to point the
finger at the Avelox. I was also on Levaquin a few weeks earlier.
I have noticed some interesting things. I took the Levaquin and
Avelox with prednisone, an immunosuppressant. The ADR did not appear
until after I had finished the Prednisone, but I was still taking the
Avelox (day 13). I then started to get joint pain, etc. The rashes
didn't appear until about 5 days after I stopped the Avelox, right
after I went into the gym to lift weights (bad idea). My theory is
that the exercise released Avelox from my muscle tissue and back into
the bloodstream. Since the prednisone was no longer there, my immune
system went into overdrive and started attacking my skin (rash) and
tendons.
Ultimately, I may have to contact Dr. Flockhart, or a specialist. My
doctor thinks things will improve within a few weeks. I really hope so!

From: ddmdoro <ddmdoro@y...>
Date: Wed Apr 14, 2004 1:19am
Subject: Re: Update
I've also experienced the aching in the calves and extreme anxiety.
I spent the night before Thanksgiving in the Emergency Room because
I felt so bad that I thought I should be hospitalized - extreme
fatigue, anxiety, whole body tremors, etc., and this was approx. 6
weeks after taking Cipro for five days.
You are fortunate that you have a doctor who knows what's up. I went
through all the tests and was told that I probably have a virus,
that I have symptoms of fibromyalgia, that I have symptoms of
chronic fatigue, that my blood count reading is similar to someone
w/Lupus, etc., etc. I kept saying, "It's the Cipro", but no one
believes me.
I can tell you that, six months later, I no longer have the aching
calves, extreme fatigue and anxiety. I DO have the tremors/weakness
in my limbs, but not as severe and not constantly. When these start
up, I do get anxious/irritable.
Again, I am extremely grateful to all on this site who have shared
their stories and suggestions.
Best of luck to you.


From: jeanhanna212 <jeanhanna212@y...>
Date: Wed Apr 14, 2004 3:47am
Subject: eye problems
Hello,
I was wondering if anyone has ever had their eyes flicker form
side to side? The technical term is nystagmus, which is usually
noticed in a neuro exam not just by looking at a person's eyes. This
is usually seen in neurological diseases and alcohol toxicity. Is
this also associated with quinolone toxicity??


From: jeanhanna212 <jeanhanna212@y...>
Date: Wed Apr 14, 2004 4:23am
Subject: skin rash?
During my recent flare, I developed a bumpy rash on my back, upper
arms, and face. The rash was dry and itchy. It has been more than 3
days and that rash is still present. This a new symptom that
developed after 3 months after i first took Cipro. Is this related
or is this an indication of something else?


From: <sweet1956pea@a...>
Date: Wed Apr 14, 2004 11:13am
Subject: Re: tremors/pain on one side
I have had pain on only one side of my body many times. It has occurred on
both sides, but the left more than the right (I think). Nothing seems to
trigger it, that I can tell, and it has always been straight down from the middle
of my body, the top of my head to the bottom of my foot on whichever side it is
going on. Now is that weird, or what?
Have a good one all.


From: rickfinn123 <rickfinn123@m...>
Date: Wed Apr 14, 2004 7:15pm
Subject: aspirin seems to help me
I had a bad reaction from a single 500mg dose of levaquin last week
(see post 18526).
I beleive aspirin is helping by reducing nerve swelling or muscle,
tendon swelling- releiving pressure on nerves.
On friday i had a chiropractic adjustment of the middle spine,
shortly afterward I realized i didn't seem to have to help out with
breathing. Friday nite was more relaxed and I was producing a lot of
gas(bowels working?) Breathing and heart were improved over weekend.
I think I was getting my appetite back. Less pain in upper rt leg.
Another middle spine adjustment (Monday afternoon)put me back where
I started from, a third adjustment 30 minutes later provided no
improvement.
PCP on Tuesday found lung congestion (never had it before), talked
to him about inflamed/swollen nerves. He said to try aspirin.
Two hours after taking 1 enteric coated aspirin my breathing
improved and chest congestion improved (started coughing a lot after
doctor visit).
Congestion and chest pressure started returning 24 hours later, once
again a single aspirin has helped the situation.
I also started having gas about an hour after aspirin, each time.
Other improvements: eyes seem to work together better, chest feels
lighter.
Cautions: This might just be helpful for me. aspirin can be
dangerous also, I have heard enteric coated more gentle for stomach.
Hope this helps,
Rick
PS, I'm holding off on chiropractic for a while.


From: maktraveler <maktraveler@y...>
Date: Thu Apr 15, 2004 4:47pm
Subject: 1 yr after Levaquin ADR- no disability for Fibromyalgia
What kind of test can they do to prove my condition isn't just
Fibromyaliga? Worker's Comp & Social Security don't consider
Fibromyalgia a disabling condition. But I can't do my job!
I took Levaquin Feb 2003. Within 4 days I was unable to walk, with
muscle pain, burning, & stiffness. I had insomnia and really weird
dreams. I thought I had MS! So I researched and found Dr. Cohen's
article on Levaquin's ADR's. Once I realized I was having an ADR to
Levaquin I immediately stopped its use. That was after taking it
for 7 days.
Now, over a year later, the ADR has lingered. Shortly after taking
Levaquin my work was affected. I could no longer "mouse" with my
right arm. My muscles/tendons hurt too bad. I had to learn how to
mouse with my left arm. That worked for a while, but now I can't
even type or mouse for any length of time at all. I'm in so much
pain right now, just typing this message.
Last August 2003 I filed a report of my continual condition to
MEDWATCH via internet and received their confirmation of receipt.
Over a year after being "floxed", now I am unable to do my job
because I can't sit 8 hours a day using a computer. My arms and
legs are weak, burn, and ache. I still can't even grocery shop
without severe leg pain afterward. I wake up in the morning and my
entire body is burning, aching and stiff.
The Doctors have ruled out Lupus, MS, carpel tunnel. My
Rheumatologist thinks I have Fibromyalgia but says I'd have to have
the best lawyer in Colorado to get disability to pay on
Fibromyalgia. Worker's Comp and Social Security don't consider it a
disabling condition.
So if I can't work, and if doctors can't seem to prove my disabling
condition to be other than Fibromyalgia, how am I to make a living?
What kind of test can they do to prove my condition isn't just
Fibromyaliga?


From: rionews <rionews@y...>
Date: Thu Apr 15, 2004 5:51pm
Subject: Do you see trails?
Just wondering how many others see trails in their vision?
Mine vary a lot, depending on the light, but I see trails and after-
images of moving objects, like hands, forks, etc. Also, I see a
diffusion of lights when I look into artificial light, like halos
around the lights. Floaters and spots, too.

From: Ernest Waite <Waite85@m...>
Date: Fri Apr 16, 2004 3:15am
Subject: Re: Levofloxacin ( A Sensitive Subject )
Hi, my name is Ernie and I would like to tell you that I was on 500 mg of Levofloxacin and after taking it for 7 days I had a terrible allergic reaction and had about 100-150 blisters in my mouth and down my throat that burned sooo bad and after returning to the Veterans hospital ER I had about 4-5 doctors looking at me and while they were looking at me and saying things like Stevens Johnson Syndrome, Behcet's Disease, It was about 15 minutes later that my scrotum and penis had started to turn black and the skin started sloughing off and burning that I just wanted to die. I was then put on morphine dilaudid drip pump for the next 21 days. Before I was released from the hospital I had an implanted morphine pump put inside my abdomen and have been on morphine now for the past 4 years because the burning PAIN has never stopped. I was left with burned nerve endings in my mouth and my privates and can not make love to my wife, I have been married for 24 years and I am a lucky man that I have such a wonderful wife, this Disease has changed my life and my whole family has had to adjust to me never working again and being very depressed all the time. I see about 4 doctors a month Dermatologist, Rheumatologist, Mental health, and my primary doctor fills my morphine pump up every 6-7 weeks and writes my prescription for oxycontin. I had developed osteoporosis because my Rheumatologist kept me on steroids for 2 years. He had first diagnosed me with Stevens Johnson Syndrome for the first 5 months then diagnosed me with Behcet's Disease for 3 years and then in 2003 diagnosed me again back to Stevens Johnson Syndrome. I was given Levofloxacin in May of 2000 and to this day I am still messed up and suffer every day with this terrible burning PAIN. Sorry this is so long but when I start I can't stop typing, this is one time I get to vent to other people instead of my wife and kids. I have a daughter 22, a son 19, and another son that will be 9. Thanks again for letting me vent and keep e-mailing because I do know what your going through and GOD knows it's HELL.
Ernie



From: <mcorey1234@a...>
Date: Fri Apr 16, 2004 2:46am
Subject: Re: Levofloxacin ( A Sensitive Subject )
In a message dated 4/15/04 11:13:52 PM, Waite85@m... writes:
> . I was given Levofloxacin in May of 2000 and to this day I am still messed
> up and suffer every day with this terrible burning PAIN.
>
Dear Ernie,
What an unbelievable story! I am so sorry that you've had to suffer from
this wicked drug for so long. Both my fiancee's life and my own life have been
absolutely RUINED by the quinolones. I myself haven't been able to drive, or to
walk, for over a year because of a toxic reaction to Floxin, that produced
a never-ending Achilles Tendonitis. My blood vessels are also royally messed
up as well, to the point that I now have to take 2 shots a day of Heparin just
to maintain semi-normal blood flow, since the Floxin also caused my blood to
become hypercoaguable.
My fiancee, in fact, had such a horrendous reaction to Levaquin that all of
her arteries and veins began to get very swollen and large, and HARD to the
touch. It was terrible....she would turn black right in front of my eyes, and it
was because of another Levaquin-induced disorder that oxidizes the iron in
hemoglobin, so that it can no longer carry oxygen. No one was able to help her
at this point, so I consulted a friend of mine who is a nutritional
biochemist, and he suggested germanium to help with oxygenation. Well, thank God it
worked like a charm. But she is still damaged profoundly to this day, 14 months
after her initial injury. She may never be able to work again. On most days she
just can't get out of bed at all.
I've also had horrendous neuropathic pain. Have you tried high dose folic
acid treatment? When my neuropathy first started, I was doing 10,000 mcg
INJECTIONS of this holy substance several times a day, and each shot made me feel
lots better. When I told my unbelievably naive and ignornant neurologist this
fact, he said, "Oh yeah, folic acid is required for normal nerve transmission."
Duh!
Also, high doses of Vit. B-12, preferably methylcobalamin from Life
Extension, is another great treatment for neuropathy, along with lipoic acid and
Acetyl-L-Carnitine. Vit. C is also a tremendous help as well.
I've also been taking daily shots of growth hormone to help rebuild my tendon
strength, but so far, not much luck, even though I also just finished doing
47 hyperbaric oxygen treatments. They helped a good bit at the time, but the
effect has now worn off.
I also now find that anything that utilizes the GABA neurotransmitter system
makes me MUCH worse, like the supplement GABA or the drug neurontin, which is
GABAPentin. This is because the quinolones bind so viciously to the brain's
GABA receptors that they end up damaging them outright in the
end......apparently permanently.
This all, of course, just makes me sick. It's ruined my life more than words
can say, and although there's more to life than being to drive and to walk
well, it's also true that one cannot function as a normal person this way.
I was also diagnosed with a "toxic brain syndrome," by SPect Scan. I sowed
a "toxic encephalopathy" which is just another way of saying a pathologically
sick brain, which is only getting half the amount of blood flow that it's
supposed to be getting. My pituitary, for instance, wasn't getting enough blood
support in the brain, which is why I'm taking growth hormone and heparin for
better blood flow (from Floxin-induced "thick blood.")
We've been seeing the great Dr. Bill Rea of Dallas, TX, but he is expensive
and insurance doesn't cover this type of "environmental doc."
I'm also taking supplemental RNA in large doses to provide our
quinolone-altered DNA with enough extra nucleotides so that our DNA could possibly reprogram
themselves in the right way again. It noticeably helped, as did huge oral
doses of phosphatidyl choline.
And I'm still not able to walk well or drive. But this is nothing compared to
what you've been though. I don't know how you can stand it, but hopefully
some of what I've mentioned in this email may help you. But remember, what works
for me may not work for you, so I'd recommend a thorough workup by a doc that
knows what he's doing in these crisis situations, like the great Dr. Bill Rea.
Have you tried doing any Vit. C. IV drips? They have been such a blessing,
largely because of the magnesium that's put in them. Also, a few IV infusions
of the detoxifying tripeptide glutathione should help you a lot.
Good luck to you, and please know that I empathize with your pain more than
words can say. A few months ago I was confined to bed in the middle of Palm
Desert, and I was so sick that I could barely make it to the bathroom, even
though it was sunny and beautiful outside.
I believe that some type of grounding in a higher power is helpful in these
trying cirumtances. I am a writer and researcher in science and theology, and
the point of my research has been to integrate science and religion into one
over-arching worldview, which I've done in my latest book: THE GOD HYPOTHESIS:
DISCOVERING DESIGN IN OUR JUST RIGHT GOLDILOCKS UNIVERSE. My other books and
research articles can be found (if you're interested) at www.MichaelACorey.com.
Fortunately for me, I finished work on this last book a few months before
my quinolone disaster. Now, I'm doing good to just be able to write you
this letter! It's amazing how these evil drugs are able to reduce us to just a
shadow and glimmer of our former, normal selves. Oh, how I regret the day
that I ever took my first dose of Floxin. Oh, how I despise the
pharmaceutical industry, for knowing that these reactions are happening a lot more than is
being reported (because most people don't make the connection between their
nightmarish symptoms and their prior quinolone use. For instance, a dear friend
of mine was given Tequin in the hospital for pneumonia, and she ended up
getting a life-threatening heart arrthymia from it, so she had to have open
heart surgery to have a cardiac defibrillator installed.
These evil quinolone drugs will turn out to be the thalidomide of our current
generation, and it's probably going to end up being much worse. Someone needs
to let the world know about what's really going on here.
Good luck to you, and may God bless you and your family. I will pray for you
and your family, and if you would like more information on possible
detxofication therapies, please feel free to give me a call.
Warmly,
Michael A Corey, Ph.D.

From: captainkoyo <cartman882002@h...>
Date: Fri Apr 16, 2004 7:57pm
Subject: Re: your story
Well chronicled Justin,
Have not been on this board for a long time because i'd like to
think i am well now.
Everything you described was what I experienced too. And no one, no
doctors believed what I was saying about the drugs.....
It's like a forced state of depression that one just needs to find
his/her own way out off. Be happy. Relax and try to ignore the
symptoms.
This forum helped me from going off the deep end...
Cartman88


From: paul keels <paul_keels@y...>
Date: Sun Apr 18, 2004 8:59pm
Subject: FQ's and Testicular Cancer?
Hi. My name is Paul. I’m a 51-year-old male, and a
returning subscriber to this forum. I've been a victim
of fluoroquinolone toxicity since September 2000, and
was diagnosed in March 2003 with testicular cancer.
I'm seeking information regarding fluoroquinolone use
as a potential factor in the incidence of testicular
and other forms of cancer. Through DrugVictims.org,
I've located the abstract of a medical paper entitled
"Adverse Testicular Effects of Some Quinolone Members
in Rats." Other results of my internet searches have
led me to ironically alarming references to the
therapeutic use of quinolones in chemotherapy
treatment for human testicular cancer. A recent local
newscast also featured a medical segment discussing
the possible association of antibiotic use in general
with incidence of breast cancer.
I’ve just begun my search, and would welcome the input
and assistance of this group. The purpose of my
interest in this subject is both to learn from and
hopefully to contribute to the clarification and
understanding of any possible correlation of quinolone
use and cancer occurrence.
For your background, I was initially prescribed
Levaquin for treatment of a skin infection on my thigh
in September 2000. My ADR covered much of the scope of
classic FQ reactions, including cardiac arrhythmia,
which was my primary concern at the time due to a
previous heart attack. The usual plethora of other
central nervous system and musculoskeletal symptoms
were painful, severe and long-lasting. They are
described at length in my first post to this forum on
October 11, 2000 (Post No. 2507). Although some of my
symptoms gradually subsided during the following two
years, I continued to experience both ongoing and
cyclical effects.
In November 2002, I had an apparent FQ toxicity
recurrence that I suspected was caused by a restaurant
meal of farm-raised salmon containing high
concentrations of fluoroquinolone antibiotics. Within
hours of that dinner, I suffered spontaneous and
extreme central nervous system disorders, including
insomnia, anxiety, muscle cramps, spasms, twitches and
neuropathy that were debilitating for about a week,
and then seemed to subside surprisingly quickly to
approximately their previous level.
Whether relevant or not, I became ill about six weeks
later with fatigue, allergy or cold-like symptoms,
cough and severe difficulty breathing, which I
self-diagnosed as bronchitis. That illness lasted from
about Christmas 2002 through early February 2003. I do
not necessarily mean to imply a relationship between
this illness and the November FQ attack.
In March 2003, I was diagnosed with embryonal cell
testicular cancer, an aggressive but relatively
curable form of the disease. One week later, I
underwent a radical left orchiectomy for surgical
removal of the malignant testicle. A month later, a
surgical specialist performed a precautionary
retroperitoneal lymph node dissection.
In August 2003, nevertheless, I was diagnosed with
Stage III metastatic tumors in one or more of the
remaining retroperitoneal lymph nodes and in the lower
left lung. I completed four 21-day cycles of
Cisplatin, Etopiside and Bleomycin chemotherapy in
January, 2004.
The first post-chemo ct scan showed significant but
inadequate reduction of the sizes of the masses. The
general treatment for such masses is surgical
resection, except when continued malignancy is
indicated following chemotherapy. At that time, my
oncologist advised me that there was a 40% chance that
the masses were scar tissue, a 40% possibility that
they could be benign teratomas (tumors), and a 20%
chance of residual malignancy. A motivating factor for
surgical removal, if benign, is the possibility that
the growth of benign teratomas can become invasive to
surrounding tissue and organs. In my case, the
retroperitoneal mass is located between the aorta and
the vena cava. Benign teratomas can also become
malignant over time, if not removed.
Two months ago, a follow-up ct scan showed no
detectable increase in the size of those masses.
Simultaneous blood tests indicated the Alpha-Feto
Protein and Beta HCG tumor markers were within the
normal range, as they have been since immediately
following my initial surgery over a year ago,
including the period of metastisis to the lymph nodes
and lung.
Based on that information as of March 31, my surgeon
scheduled me for a resection of both residual masses
on April 28, just ten days from today.
According to the bloodwork results I received from the
urology clinic a few days ago, however, the AFP tumor
marker is now significantly above the normal range,
while the Beta HCG level remains unelevated. My
surgeon has not yet discussed this latest finding with
me. I’ll speak with him this week. He had already
indicated that I would undergo another ct scan and
tumor marker retesting immediately prior to the
scheduled surgery. My hospital pre-admission
appointment is Thursday of this week.
There is a third tumor marker, Lactate Dehydrogenase,
for metastatic testicular cancer. LDH, as I
understand, is a blood protein for which I have never
been tested. Official literature on cancer diagnosis,
however, indicates that LDH level can be a reliable
indicator of the presence of malignancy, even when
other tumor markers are within normal range. I’ll
inquire about this tumor marker this week, and intend
to request the test be conducted as soon as possible.
It’s my understanding that if either the ct scan or
blood tests indicate continued malignancy, surgery
will be postponed and I’ll be referred for another
course of chemotherapy instead. If they proceed with
the resection at this time, however, and discover
residual malignancy during the surgery, I’ll be
referred for post-surgical follow-up chemo. One of my
fears, in that event, is that I would then require yet
another surgery after that chemo to remove further
scar tissue.
As you can see, it continues to be a lengthy and
complicated process. My thanks to you for taking time
to read this post. And I thank you in advance for any
information, direction or assistance you may be able
to contribute toward understanding and preventing
another life-altering illness that may possibly be
caused by prescription fluoroquinolone antibiotics.
And if you know of ongoing reputable research on this
or related issues, please also advise me of how I may
share my medical information with those studies.
My greatest good wishes for patience, strength and
recovery to each of you who are suffering your own
illness and difficulties.
Thank you again.
Paul


From: Carol Peterson <carolpeterson@y...>
Date: Mon Apr 19, 2004 1:08am
Subject: I need documentation - linking fq's to Vascular Compromise
If anyone has info linking fq's to vascular compromise (restriction
of blood-flow), I would be eternally grateful to receive it!!
I need documentation that fq's can cause vascular constriction
(compromise), to show my doctor.
I am partially blind, after 4 Levaquins; I have permanent blind
spots & damage to my retina (both eyes). My retinologist says the
damage was ischemic... meaning the blood supply was cut off or
reduced, causing cells to die.
Like most doctors, he is amazed that a fq could possibly cause
this. I really need documentation!
If you can help, I thank you very, very much!! My email address is:
carolpeterson@y....



From: ddmdoro <ddmdoro@y...>
Date: Mon Apr 19, 2004 9:23pm
Subject: knee pain
Hi,
I'm 7 mos after Cipro and am experiencing significant discomfort and
stiffness from the outside of my knees to the back of my knees when
walking/climbing stairs -not the kneecaps themselves. I began
walking 2 to 3 mile distances a couple of months ago. Recently cut
way back on my magnesium and calcium. (I have/had other symptoms,
but no tendon problems.)
Anyone else experienced similar?


From: unitedvisions2003 <unitedvisions@g...>
Date: Tue Apr 20, 2004 9:32am
Subject: Cipro-Pediatrics and the FDA.
Dear all
In fall 2003 the manufacturer of ciprofloxacin (Bayer) was granted another
6 month exclusive marketing rights for their quinolone on condition
that they undertake further studies in a pediatric population to assess
arthropathy (cartilage damage,).
Recently, Bayer presented the results of their pediatric studies.
Bayer recommends to update the labeling to add complicated UTI
in infants and adolesents (1 up 17 years of age) to the list
of indications.(????????????????????!)
Arthrosis (=osteoarthritis, irreversible cartilage damage , leading to arthrosis deformans
and eventually joint replacements) occurred in 4 out of approx. 350 kids.
These poor kids were given the drug over a period of about 10 days at very high
doses (based on body weight).
However, these studies included follow-ups of only about 1 year. So basically
they don't say a thing!
I sincerely hope that the FDA won't follow Bayers' recommendations.
For the sake of mankind.
Additional comment:
The FDA seems to underestimate the potential risks and hazards of these drugs.
This may be, at least partially, due to an immense over-prescribing of antibiotics
in the US and the resulting problem of resistence.
In the US doctors seem to throw antibiotics at everyone with a slight temperature
and a sore throat.
This may be due to the legal system in this country , where doctors are so afraid
of being sued. For them it's easier to prescribe an approved (!) antibiotic than
to miss a potential serious infection.
By contrast, in Europe authorities appear to be a lot more aware of the potential
dangers associated with these drugs.
The recent withdrawal of gatifloxacin (Tequin) in Europe, the complete ban of
trovafloxacin (Trovan) and the non-availability of lomefloxacin(Maxaquin) in Germany
due to its phototoxic potential are indicative of a different regulatory attitude.
For the aforementioned study , here's the FDA link
(alternativelly, perform a search on their web -site using "Cipro pediatrics")
http://www.fda.gov/cder/foi/esum/2004/19537_Cipro_BPCA_clinical.pdf
Yours
Mark

From: unitedvisions2003 <unitedvisions@g...>
Date: Tue Apr 20, 2004 9:54am
Subject: Re: FQ's and Testicular Cancer?
Dear Paul
I'm so sorry to hear about your health problems.
I checked your previous post (2507) where you
state that you took only 6 doses of levofloxacin.
The article you quote regarding the adverse testicular effects of
FQ from Egypt is very interesting, as these guys couldn't figure
out how different ( industrie-sponsored) researchers apparently
didn't detect any abnormalities.
This is actually a good example of fraud in science.
It has always been my personal impression that the FQ manufacturers
haven't disclosed all data to the FDA and withheld crucial toxicity information.
You must bear in mind that ALL antimicrobial agents affect the male testes adversely.
For a long time this was not appreciated by the medical community.
Returning to your case, it's extremly unlikely that the FQ caused
your testicular cancer ( especially due to the few doses, and the period between your course and the diagnosis of the cancer).
However, the levofloxacin might have made your underlining cancer manifest itself more quickly.
Yours
Mark


From: nestle112004 <catalina@m...>
Date: Wed Apr 21, 2004 5:17am
Subject: Question about behavior
I have been reading some of the different postings. My husband took
CIPRO for 2 days about a year ago, had some severe reaction,
including anxiety and panic, followed by severe headaches much of
the summer. This was all coincident with issues in our marriage-he
had an affair, and to me seems to be a different person. He didn't
act the same when I'd talk to him, and he decided to move out and
filed for divorce. I'm trying to figure out the exact timing of
things, which may have started before the CIPRO, but my then 14-year
old daughter described her dad as "demon-possessed" last spring, he
was very irritable and would almost tantrum like a small child when
confronted about things. Now I am wondering if much or most of this
behavior may be CIPRO-related, but I don't think he'll believe me.
He had a strong history of migraines before the CIPRO, and there is
alcoholism in his family, as well as suicides.
Do you think there is anything I can do at this point? I sent a
copy of Jay Cohen's article to his doctor and his therapist, and to
him, but I'm guessing nothing will come of it. Do these behaviors
fit?
-Kathy


From: fsalomons <fsalomons@y...>
Date: Wed Apr 21, 2004 2:56pm
Subject: I was FQ'd also -in Calgary.
In early February I went to a walk-in clinic for a UTI and was given
a 7 day program of Cipro. After 2 weeks, it was not completely gone,
so I went in again and was given a 7 day program of Levaquin. On the
third day I suddenly awoke in the night with severe tingling,
prickling and numbness from head to foot, especially in my
right arm and behind my right knee.I also felt very panicked. (I was
also taking Advil during this time as well, I understand this was a
no-no).
During the next few weeks, I went to Emergency twice, my family
doctor 3 times, 2 specialists and had so many tests- in the end it
was dismissed as anxiety and stress. I am not normally an anxious
person but I was getting agitated which probably only added to their
observation. Being 52 and menopausal also probably didn't help! But I
knew it wasn't that, why did this happen so suddenly when everything
was just fine before?
I was told by one doctor it could be a gluten allergy or mercury
fillings leaking.
One doctor prescribed Ativan which did help but since it is habit-
forming I have stopped using it.
A naturopath told me to use Vit B12, Q10 enzyme and L-cartnine(sp?)
to help repair the nerve damage.
I was grateful to find this site to prove I really wasn't going crazy!
Months later, I still have severe prickling, numbness and my right
wrist hurts a lot. I also feel "depersonalized".
How long does this last?
Thanks!



From: chiggins1066 <chiggins1066@y...>
Date: Wed Apr 21, 2004 5:42pm
Subject: Re: I was FQ'd also -in Calgary.
If you look at my previous posts, I had a lot of the same problems you
do. Pins and needles, pain in the wrists, etc.
I went to a Neurologist this morning, and he tentatively diagnosed me
with carpal tunnel syndrome. He doesn't believe it is neuropathy,
since that tends to be systemic. My problems are exclusively in my
hands (although I did have issues with legs and joints while I was on
Avelox).



From: headsparks2000 <cholcombe@c...>
Date: Wed Apr 21, 2004 6:49pm
Subject: Possible New Symptoms
Hey there, kind of an old member here. I posted back in November
when I started having strange symptoms after 4 days of 500mg of
Levaquin (started with floaters, insomnia, tightening of muscles for
no reason), the muscles felt better but in Dec, started to get
chronic burning tongue & swollen glands that would move around.
Doctor checked me for candida...none found to this day, I've had
three blood tests, the latest was a CBC, checked me for allergies &
also did an Antibody Titer test...doc said everything was perfect.
All of my symptoms have abated except for the floaters & some
insomnia...about a month ago I started to get a dull headache that
would persist all day long. I can count on one hand in all my 32
years how many headaches I get in a year. Over the last three weeks
it has been non stop. Aspirin doesn't work, even tried Allegra-
D...thinking it was from pollen. Just saw the doc & they checked me
for a sinus infection & did a CT scan...none found. Has anyone else
had chronic headaches from the "cycling" effects of this drug?
Thanks,
Chris


From: ivanborowick <ivanborowick@y...>
Date: Wed Apr 21, 2004 9:50pm
Subject: Saw recommended doctor
Hello all,
I saw the Childrens Hospital Sports Medicine doctor today. He was
very positive, and open to listening to the idea that my tendon pain
is related to my having ingested 10 500mg cipro pills. He was
familiar with the reaction, but hadn't treated any real "floxed"
victims. I was given x rays to identify any bone spurs and he
decided to skip the MRI and Ultra for now as the swelling is very
low and I am walking almost normally now. He was sure an MRI
wouldn't reveal anything. The X rays came back fine.
He is assuming I am having a combination effect from the Cipro and
the elevated running workout that I had started two days before my
first Cipro and continued until the pain hit my left achilles (which
prompted me to research achilles tendonitis and led me to find out
about the cipro ADR). He says there is not much in the way of
tendonitis but moreso a Bursitis near the bottom of the tendon.
The pain I'm having comes and goes in the left leg. I never reached
a point where I couldn't walk but I had to adjust my walk to
compensate for the pain. The left leg was gradually feeling better
over the past few days but now I'm feeling the very beginning of
soreness in my right achilles. I took the pills from 4/9 - 4/14.
It seems the worst of the pain has passed, but I'm mentally
preparing for the stuff to cycle just in case and I'll have to wait
and see about the right tendon getting worse.
He sent me to the PT group he's affiliated with and instructed them
to do minimal range of motion work and no stretching. They insisted
that I do nothing that cause pain to the tendons and that I rest
them until my next visit to both offices on May the 5th.
All of this tells me that there is no silver bullet to cure the
ADR's which I already knew pretty much. I'm just glad to have
intelligent and open minded docs observing my case.
I'm really hoping that this stuff continues to fade and the reports
I have seen show the odds in my favor for the ADR clearing in 15
days to 6 months. I can live with that. But I will keep you
updated and I am planning to submit my questionnaire and other info
to Vonnie as soon as I return from LA on Wed.
I submitted a medwatch form.
Best of luck to you all.
With love and sympathy,
- Ivan

From: toomuchpsi383 <toomuchpsi383@y...>
Date: Thu Apr 22, 2004 4:55pm
Subject: Re: reply to Ivan
It took me over a year and a half to get past most of the ADRs I had
from Levaquin. I was on Levaquin for almost 2 months straight for a
prostate problem before I had the horrible reactions..
The first 8 months was the worst for me and after that I had "cycles"
that came and went, lessening slightly each time. Anxiety/ jittery
does come back as more of an annoyance now, and not the intensity as
at first.. My nervpus system is still over-reactive today it seems. I
still cannot have a single bottle of soda, or it will set me off. ( I
used to drink 5 a day)
Muscle and joint pain took the longest to go away. Mostly cycles
after the firt year, but is now totally gone.. I am back in the gym 2
1/2 years later lifting heavy again. (34 year old). Other symptoms
liek vision problems, ringing in the ears, muscle twitching still
persist today. Not bad considerng what did go away for me.
Everyone is different when it comes to time it takes.. Time is your
best friend concerning these terrible ADR's.
Kevin

From: <sweet1956pea@a...>
Date: Thu Apr 22, 2004 4:09pm
Subject: Re: I was FQ'd also -in Calgary.
Hi ~ Just read your original post. I am in about exactly the same situation
you are. 11 programs of Levaquin in 3 1/2 years. Age, "menopausal",
previously labeled "depressed and anxious".
If I had not realized when I did, that the Levaquin was causing the problems,
I would be dead right now ~ no doubt about it.
The psych symptoms I have now are not like ANYTHING I have ever experienced
before. I only now understand what anxiety is ~ and beyond ~ panic,
paranoia...etc. I never had it before, nor the depersonalization, etc.
And I don't know when, or if, it will stop. It appears no one does. That is
even if the "medical expert" accepts the "theory" that the quinolones are to
blame. I am an expert when it comes to my body (lived with it for 47 years),
and I know for a fact that the quinolones are to blame, and that I have brain
damage from the poisonous levels I was given by my "medical expert".
I don't have any answers, other than just realize you absolutely are NOT
crazy. Get someone on your side (hubby?) who can reassure you, and just hold and
comfort you when it seems you are truly losing your mind. My husband has
gotten really good at that, and has talked/hugged me through some very difficult
nights. (That is when is seems to strike/start for me).
Good luck. Hope you find someone who can listen/help/anything.
Patti

From: jennyboychuk <jennyboychuk@y...>
Date: Thu Apr 22, 2004 9:43pm
Subject: Re: NSAID Aleve
That is the same question I was going to ask today. I took 6 pills
of 250mg of Cipro for 3 days ending last Feb 15th. So over 2 months
ago and my shoulder pain is just as bad as it has been for the last
month (but seems to maybe have plateaued). Anyway, I didn't take any
Advil or Aleve last week and my shoulders were always very sore but
liveable. Then I took 2 Aleve last Sunday night because I was sick
of the soreness and Monday evening it felt like someone was sticking
a knife into by shoulders. It was better Tuesday morning, but at
work I could feel my shoulders getting worse and I was planning to
walk for an hour on my lunch break, so I took two aspirin and again,
later that evening, worse pain than when I had not taken any NSAIDs.
I thought about it yesterday and didnt take any NSAIDS. I am still
very sore, but do not have the worst pains that I seem to get about
10-20 hours after taking NSAIDs. So I do not think I will take any
anymore.


From: toomuchpsi383 <toomuchpsi383@y...>
Date: Fri Apr 23, 2004 2:40pm
Subject: Re: reply to Ivan
My eye problem is permanent blurryness in my left eye.. The
opthamologist (spelling?) told me it looks like a case of getting
older. But I told him it went from better than 20/20 vision and
within in one week after Levaquin reactions to 20/40 vision..It is
not bad at all and I do not have to wear glasses, because my right
eye is able to compensate. Still in my eyes Levaquin totally screwed
my left eye over.. Why it is one eye and not the other also?? I have
no idea. These ADR's will do crazy stuff to our bodys.
I had exteme sensativity to light for the first few months..I
remember going to Outback Steakhouse and unscrewing the light bulb in
the light over the table it was soo bad.. Thank god my Fiancee
already thought I was crazy before my reactions, and was able to
cope. LOL
Kevin

From: build_it95 <build_it95@y...>
Date: Sun Apr 25, 2004 0:25am
Subject: high cholesterol ?
Has anyone else had their cholesterol levels rise after taking
Levaquin? Also has anyone tested negative for reumatoid factor but
had visible swelling in back of knees or back of ankles?


From: librarian1234567890 <owoodward@h...>
Date: Sun Apr 25, 2004 9:17pm
Subject: Re: high cholesterol ?
Yes to both - cholesterol went up, and I have swelling in my legs,
particularly in the front shin muscle, around the knees, and behind
the knees. The trouble is, my doctor doesn't perceive my legs as
being swollen, but it is obvious to me. Sometimes they feel like
sausages...
Olive

From: Debra Morse <debm@c...>
Date: Sun Apr 25, 2004 9:23pm
Subject: Re: high cholesterol ?
Well apparently mine have risen. I saw my cardiologist last May the week after
finishing 9 days of Levaquin and the cholesterol levels checked out alright
but I saw him again this April and I got a call at home the following week telling
me to double my intake of pravachol and to come back in two months for more
cholesterol tests!
I also had a cycle of pain in both shoulders, both knees and both hips recently
and my orthopod did a bone scan (even though I told him what was happening sigh...he
didn't believe me) and all it shows is arthritis in the right shoulder (which
I already knew about) and arthritis in the right knee (which I didn't know about).
Debra


Has anyone else had their cholesterol levels rise after taking <BR>
Levaquin? Also has anyone tested negative for reumatoid factor but <BR>
had visible swelling in back of knees or back of ankles? <BR>
<BR>



From: <WAlakhdar@a...>
Date: Sun Apr 25, 2004 8:43pm
Subject: Re: Re: high cholesterol ?
Hi Olive:
My legs have swollen horribly, expecially around the joints. My ankles fold
over and my knees have massive fluid behind them and around them. Hard to
bend the knee, walk, or move them at all. Terrific pain that nothing helps.
I ran across a link that looked interesting while doing my research. A study
I was looking at mentioned this disease onset as a result of levaquin with
mice in a controlled study. So I looked it up and this is what I found.
http://www.merck.com/mrkshared/mmanual/section5/chapter52/52b.jsp
Mary


From: <WAlakhdar@a...>
Date: Sun Apr 25, 2004 8:49pm
Subject: Re: high cholesterol ?
Debra:
I tested negative for the RH factor and have horrible swelling behind the
knee. It prevents me from actually bending me knee a lot of the time, and it
isn't water. Doc gave me a water pill and it made no difference.
Mary


From: rionews <rionews@y...>
Date: Mon Apr 26, 2004 2:28pm
Subject: Re: Possible New Symptoms
Yes!
I took six weeks of Cipro. About a month later I got a headache that
lasted an entire month. Not excruciating pain or anything, but
constant. I couldn't realistically treat it with aspirin because I
knew it would still be there when the drugs wore off. While the
headache would emanate from the back of the head and included a
pressure sensation on the forehead, it also had features of sinus
headache. Pain in and around the eyes and with eye movement. It went
away, although I now get more headaches than I used to before Cipro.


From: build_it95 <build_it95@y...>
Date: Tue Apr 27, 2004 11:04am
Subject: Re: FQ's and Testicular Cancer?
--- In quinolones@yahoogroups.com, paul keels <paul_keels@y...> wrote:
Hope all goes well for you Paul. I have possibly a similar situation,
I'll know in the very near future. I've noticed my testes have shrunk
considerably, and my pubic hair has been falling out so much that I
started shaving. While shaving I noticed a lump that i'm going in
soon to have checked. I was wondering if you had same symptoms,
(testicular wasting, hair loss),and also low testosterone results
from blood test.Any info would be greatly appreciated. As well I'm
trying to research as much as possible and anything I can find I'll
forward to you. Again, best of luck to you for Wednesday and please
feel free to e-mail me if I can be of any help later. Thanks Andy.


From: Angel_8384 <lparker30@c...>
Date: Wed Apr 28, 2004 10:17pm
Subject: Re: Continuation...
--- In quinolones@yahoogroups.com, bizzykidz@a... wrote:
> Hey! I wasn't finished and my last message got posted all by
itself! (and all the appliances are floxed in my house, as well!)
Anyway Public Citizen Health Research Group publishes a monthly
newletter. Dr. Sidney M. Wolfe is the editor. In the April 1998
issue he had a 2 page article denouncing the addition of another
fluoroquinolone antibiotic, called grepafloxacin. At the moment I
can not find it because of all the kid's clutter brought home
yesterday, but I will find it and post a few quotations regarding
this one as well as what he has to say about the quinolone family
and some of their problems. For anyone to be given a quinolone
after having a reaction to another is criminal,especially when the
patient informs the doctor of such, and even more so, when the
patient insists--
saw this even though old post... a doctor in the hospital i used to
go to in CT, prescribed me Cipro even after telling her plainly that
i felt "funny" after taking this... she insisted that it was the
best choice for said bladder infection/kidney infection.
is ther a way to press charges against the hospital... or maybe the
company itself... i contacted a lawyer on the net and they said iwas
not goig to be able to be helped by that firm.
am only twenty years old and my life right now is hell...

From: "blackbeltdaddy" <blackbeltdaddy@y...>
Date: Sat May 1, 2004 2:46 am
Subject: I had an adr from avelox/ can anyone help?
My second dose of avelox I woke up in the middle of the night with
the left side of my body numb and a burning in my stomach and chest.
I had my wife call 911. The paramedics said my vitals were ok, so I
chose not to go to the E-room. I could not sleep the rest the night
and actually had thoughts that I was going crazy. Since then I have
had almost all the symptons I have read on this forum. Mostly with
CNS problems. After two trips to the ER, several trips to my doctors,
several blood test, my doctor came to the conclusion that I was
suffering from depression. I refused to take meds. for this I really
dont like taking meds. if I can avoid it. So I decided to take ST.
JOHNS WORT and I must say it has done wonders for the severe anxiety
and depression.Im still having problems with tremors, weakness, and
fatigue. Before this happened I was a healthy 34 year old male. Now
its all I can do to get through the day. Its been almost two months
now and Im getting sick of feeling this way. Alot of what Ive been
reading has been old, is there anything out there that helps make you
better, faster? Also my doctor told me it wasnt a reaction when I
called the next day and to keep taking the avelox, I refused, thank
God.

From: sweet1956pea@a...
Date: Fri Apr 30, 2004 12:07 pm
Subject: Are they related?
Dear Everyone ~
I discovered yesterday that I have breast cancer. It came up quite quickly,
so we are working on a "fast track" to have consults for surgery, chemo,
radiation, etc.
There is a recent study that links breast cancer with excess antibiotic use.
I found the mass before I knew about that study. Also, on reviewing my
in-patient and out-patient pharmacy record, I have been on 44 rounds of
antibiotics
in 4 1/2 years. Is there a connection? I don't know. I also don't know
right now that I have the energy to worry about the quins ~ this other seems
more
immediately threatening.
I do have an appointment with a lawyer on the 10th of May ~ if capable, I
will keep that appointment and discuss the possibility of a lawsuit
re:quinolones. I thought the suggestion of coming from a "battery" standpoint,
having been
given quins again, after ADRs were identified.
Will let you all know if I find anything out.
Take care, have a wonderful day.
Patti

From: "Vonnie Burr" <vonnie@m...>
Date: Fri Apr 30, 2004 5:14 pm
Subject: Levaquin Tendon Rupture
All:
My father saw his THIRD white coat in three months today. [The
appointment with the FQ ADR specialist in CO comes on May 20—that will
make FOUR.] The third white coat was a sports injury specialist. My
father was referred there by his neurosurgeon [white coat # 2] for
therapy pending the May 20 visit with the FQ specialist [white coat #
4].
Turns out, the initial prescribing white coat [I like to think of him as
“Dr. ARROGANT/IDIOT/IMEBECILE/MORON /SOON -TO -GET –HIS-ARSE–SUED] who
prescribed multiple contraindicated meds [TWICE] for my father in the
first place AND the neurosurgeon “missed” [THAT’S RIGHT THEY JUST
“MISSSSSSED”] my father’s bilateral ruptured Achilles tendons. “Oh so
sorry we made him suffer in agonizing pain for three months.”
This has all occurred even though my mother and I advised the first two
white coats of that possibility 3 months ago. Since we didn’t have a
medical degree [we were just a banker and a lawyer], apparently our
opinions didn’t matter. Now, my father has an appointment with a FIFTH
white coat [who will slice his legs open and place his 69 year old
calves in casts with the hopes of him walking normally again, someday.
I hope we can find a good anesthesiologist!
Sorry, group. I promised myself I wouldn’t be negative on this site,
but I am so pissed I can’t see clearly.
I have a caution for new members [long time members have learned this]:
please look to ALL methods of healing for these terrible ADRs. There
are a multitude of potential remedies, and you should explore anything
that is safe for you. Please don’t be limited by a physician in a
specific practice and let that rule your course of healing. Remember:
It was a physician who caused you this suffering without adequate
warning in the first place.
Sorry to lose it tonight. But I am mortified by what is happening to my
family.
My very best wishes to you all.
Vonnie