Post Marketing Reports for December 2000

Doc 114
2860From: Ned Veljkovic <nveljkovic@a...>
Date: Fri Dec 8, 2000 0:59pm
Subject: RE: Nalidixic acid in Quinolones can cause intracran ial
hypertension

Hello,

I have never written anything to this chat group, but I'm definitely not new
to it. I've been reading everybody's posts for over three months now, and as
much as I wanted to believe it was the FQ's why I felt like this, I always
thought there was just something wrong with me. Until I read Shawnee's
e-mail and started to really believe. I'm 24 years old and my story begins
with a 4 week prescription to Noroxin (norfloxacin) in July 2000. The first
week went smooth without me feeling any different than before, and it took
care of the infection. Then the headaches begun. Every single day I would
get this insane pain on the left side of my head and down the left side of
my neck. It maid me squint so hard that my eyes were barely open at all
times. Then my vision got worse (in my left eye only) and I had to start
wearing glasses. All this was accompanied with tiredness, powerlessness,
depression, anxiety attacks and enormous number of bathroom visits. During
this period of three months, I would fall asleep around 11pm ,wake up around
2am and stay up till work at 8am just freaking out, scared to death because
I didn't know what's wrong. How I kept my job, I have no idea. The fact that
there was something wrong with me and I didn't know what, probably amplified
all my problems I mentioned above. I have since then done a lot of testing
to rule out some major illnesses and this made me settle down and come alive
a little bit. As far as my headaches, they're still here only they're not as
severe as before. My vision is still messed up and it only gets worse at
times. I don't have severe tendon problems, but I did pull a muscle in my
lower back three months ago, and it still hasn't fully healed. Whether this
is FQ related, I'm not sure. So, for me this year has pretty much been a
write off, and I hope I won't have many more like this one.

As far as intercranial hypertension, is this something that doctors know
about and is there any treatment for it, does anybody know a good site or
some literature I can find on this? Who ever read my massage, thanks for
your time, and any helpful advice on treating the way I feel is well
appreciated.

Thanks

NV


Doc 113
2859From: passport@m...
Date: Fri Dec 8, 2000 8:13am
Subject: Re: Nalidixic acid in Quinolones can cause intracranial
hypertension

FINALLY, something that covers my symptoms to a T. Maybe this can help me
with my SS Disability hearing in January. Am so tired of my Dr. patting me
on the hand, being kind, and shuffling me out the door.

Anymore info on this would be most appreciated. Am into this 3 years now
and seem to have stopped improvement. Its much better than in the beginning
but nothing like my former self. This is from 3 days of Cipro followed 2
months later by 2 Floxin. The Floxin is what made my brain feel like a bowl
of Jello and my vision like a Nodder Doll.

Judy Walther

Doc 112
2830From: ljb40@j...
Date: Sat Dec 2, 2000 9:59pm
Subject: Re: Re: calcium

After taking the fq's my calcium was elevated, therefore I didn't take
any supplement. As a matter of fact I have never found anything that has
helped. I am nearly 5 years into my adr and am still sick from it. And
about culture, the Dr that gave me floxin did a culture and gave me
floxin the same day, my culture came back negative, of course I had
already taken the 5 day supply by the time the results came back. Then
after going to him while I was in the midst of the floxin reaction and
not knowing that was what I was having, he decided I needed cipro and
like a idiot I took that whole script thinking * God I don't know whats
happening to me* I would of taken anything at the time to just get
well, not knowing that the fq's were my problem.
Linda B


Doc 111

2815From: Jeff Bassett <akbassett@h...>
Date: Sat Dec 2, 2000 4:55pm
Subject: Cipro Reaction

Hello

I am happy I found this group. I am very worried. I was given Cipro
for a prostate infection. Three weeks into the dose my major joints
started cracking. Four weeks later I have the same symptoms with no
improvement. I have the feeling my joints could give out if I am not
careful. My arms also fall alseep while sleeping. I also have hand
pain.

1. Will this stop?

2. Should I exercise?

Thank you, Jeff



Doc 110
2807From: MSSTANG67@A...
Date: Sat Dec 2, 2000 0:43am
Subject: Re: Re: ADR to Cipro

Thanks for the feed back from all of you wonderful people. The doctor was
indeed aware of the contraindications. In fact, as soon as my daughter began
to show signs of back-ache, we brought Kristen in and told the doctor that we
felt "very" strongly that the cipro was the cause, bringing in literature to
back everything up that we said and asked that she stop the cipro. She
immediately discounted everything we told her, including the Bayer literature
and warnings as just warnings. she asked my husband and I to show her
literature on pediatric patients that were hurt by the drug "show me other
patients that this happened to in the pediatric community, you don't want to
stop a drug that may be helping her bone infection since we can't really
prove this is what's caus\ing the pain". We pleaded and cried. Every couple
of days later, we would go into her office with a newer complaint of another
area that hurt, always with the same papers and cries for help, always
getting the same answers. My daughter was not in a situation where her life
was any where near threatened and as it turns out the original drug has
helped her bone infection, so the cipro was not the last drug in the arsenal
by any stretch. Thank God her primary pediatrician believed us, but he also
tested her for autoimmune/arthritis, lyme, and other possible causes, MRi's
showed that we weren't nuts. Up till that point my daughter was an active 12
year old that enjoyed sports and all the other good things that they do.
Now, she requires pain meds for the pain she endures daily and cries when she
sees people that haven't seen her for a while and say "hey, I know you, you
used to walk." Sometimes I feel like mailing the roller-blades to the doctor
that completely dismissed us and did this to our daughter...In addition to
all of this, my daughter has during her short life, undergone 31 surgeries to
reconstruct her face and skull, she breathes through a tracheotomy. up till
now, the best thing that was hers was her ability to ambulate...now that's
gone...Sorry that I am on a downer but I feel that you all understand the
helplessness. Thanks again, Michelle

Doc 124

2992From: stephengunder@h...
Date: Thu Dec 28, 2000 1:08pm
Subject: I need a good Chicago area neurologist

Egroup,

I need to identify a good neurologist in the Chicago land area. I
have suffered many neurological symptoms from Levaquin. Although much
of the tingling, pins and needle, and numbness symptoms have abated, I
still some neuro muscular symptoms. I am looking for a good
neurologist in the Chicago land area who specializes in neuro-muscular
problems.

Thanks,

Stephen Gunder


Doc 123
2982From: Sharon Furrate <sfurrate@h...>
Date: Wed Dec 27, 2000 6:28pm
Subject: ADR to Macrobid

Hi. I am new to this forum, so I hope I am posting this right. I just
recently made a connection to all of my bizarre symptoms over the
last year and a half as being related to the Macrobid I took back in
99 for a UTI. I had some of the rare side effects right after taking
it, but 2 months after taking it, I had horrible nerve side effects.
I still deal with weird nerve sensations today, but not as much nerve
pain as I was having. I was given Macrobid in sample form (I did not
get it filled at the Pharmacy) and the doc told me to take it for two
days, which I did. After that, I had bruises all over me for no
apparent reason, wheezing, light-headedness, inflammation of certain
organs, etc...and then the nerve stuff started happening along with
muscle twitching. It has totally turned my life around. I cherish
each day in a different way for I live minute by minute now and I am
thankful when I go...yeh I made it through today....I am so thankful
for a full nights rest now, for I did not get them for many months
after taking Macrobid...If anyone would like to discuss this drug
with me and what I have been dealing with, please contact me. Thanks
for your reaching out and support. LOve, Sharon


Doc 122
2980From: njbeanie24@a...
Date: Wed Dec 27, 2000 0:22pm
Subject: update

Hi thought i would update all of you on my husband..He has been in the
hospital for a week now..last wednesday was the last time he had a
levaquin,he had 10 altogether..On thursday of last week he was awake and
mostly alert,still having memory and concentration problems,,friday the
same...On sat.and sun..he slept most of the time i was there,when he awoke he
was very disoriented..monday he was awake but couldn't remember things and
was having trouble holding anything in his right hand..tuesday he was awake
for the most part but really confused,,today was the worse,when i got there
he was breathing really fast..having trouble with memory ,,seems to be having
bad dreams,slept most of the time i was there..he did pull his catheter out
early this morning,so they said a lot of that heavy breathing could be from
the pain...he's not putting his thoughts together very well..So here is what
we know ..they checked his heart,it's fine..his chest is clearing up nice
from the pneumonia,liver,spleen and gallbladder all fine,,did a catscan and
mri ..everything looks fine too,,had his kidneys checked,found out he was
holding his urine in,,that is why the cathater..and we found out he only has
1 kidney,,they said he must have been born that way...he's never been
hospitalized before so we had no idea..anyway that kidney is fine and
functioning as it should be,,all these people are specialists...his heart
rate is perfect and so is his blood pressure...his oxygen levels are
great,he's on oxygen because of the pneumonia..so we have a new guy on the
scene from infectious diseases,,he's looking at a blood infection or tick
borne illness,,, problem is..he has not run a fever at all it stays between
97 and 98.2...he eats 3 meals a day,mostly pureed stuff,they were afraid he
was having strokes and didn't want to run into a swallowing problem..no
strokes have shown up on the mri..he has 2 cans of boost a day also...he is
on antibiotics(NO QUINOLONES!)..they said sometimes it takes a week or 2 for
them to work,he has been on them since sunday..so anyone have any
ideas???like i said before the confusion in his brain started a day or 2
after the first levaquin..he's been off them for a week and he is worse!it's
so frustrating when you go in the room and he doesn't know who you are till
you spend some time talking with him...speech is still very slurred..and
today he didn't know anything going on around him..the GI doctor said there
is always a possibility that it was caused by medicine,but the rest of them
don't want to even go there..it's very heartbreaking to see the man i love
this way,,the disease doctor is talking spinal tap,but i would hate to put
him through that,,anyone help me? Vicki

Doc 121
2973From: Jeanne M Welling <jeannemwelling@n...>
Date: Tue Dec 26, 2000 10:57am
Subject: Re: Other Antibiotics Prostatitis -Constance

My husband also had the prostatitis. The levaquin caused all kinds of
problems and Bactrim didn't work for him. What we "think" helped was
Quercetin with vitamin C. You can get it at a health food store. You can
read about it on the prostatitis sites. He is still doing well except some
elbow pain and some pain that comes and goes in different joints. Merry
Christmas to you all and thanks for all of the support from everyone.

Jeanne


Doc 120
2968From: cbacon <cbacon@m...>
Date: Tue Dec 26, 2000 7:23am
Subject: Re: Leviquin

Hi,
My husband had a major stroke in July of this year.
Last month, he started having problems with his recurring prostrate
infection and was once again prescribed Leviquin. The pain it caused just
about killed him. The doctor told him to take Skelaxin to try to help the
cramping in his entire body.
As a recovering stroke victim, he does have spasms and some pain as his
nerves regenerate, but taking the Levaquin added a new and different kind of
pain.
the doctor then switched him to Bactrim, and the first few days on
Bactrim were also causing him cramps, but they subsided and he was able to
finish the course of Bactrim.
What would have been another option for antibiotic in this situation?
Thanks,
Constance



Doc 119
2967From: Dale Y <daleyoungblod@e...>
Date: Tue Dec 26, 2000 7:17am
Subject: RE: ADR: Joint/Tendon Pain (12-22-2000)

RE: ADR: Joint/Tendon Pain (12-22-2000)

ABOUT QUINOLONE ANTIBIOTICS: ofloxacin(Floxin), levofloxacin
(Levaquin, Tavanic), ciprofloxacin(Cipro, Baycip, Cetraxal, Ciflox,
Cifran, Ciplox, Cyprobay, Quintor), norfloxacin(Noroxin, Amicrobin,
Anquin, Baccidal, Barazan, Biofloxin, Floxenor, Fulgram, Janacin,
Lexinor, Norofin, Norxacin, Orixacin, Oroflox, Urinox, Zoroxin),
enoxacin(Penetrex), lomefloxacin(Maxaquin), grepafloxacin(Raxar),
trovafloxacin(Trovan), sparfloxacin(Zagam), temafloxacin(Omniflox),
moxifloxacin(Avelox), gatifloxacin(Tequin), gemifloxacin

Hello to the Group,

This is my first post. I'm not familiar with these posting
procedures. I'm glad to have found your group while researching
Levaquin on the web. Recently I was prescribed a 14 day dosage of
quinolone antibiotic (LEVAQUIN 500mg/day) for a prostate infection.
I knew nothing at that time of adverse quinolone reactions. On the
13th day of the prescription (12-11-00), I was awakened by severe
pain in both elbows. The joint pain soon spread to arms, legs, hands,
wrists, back, ankles, and feet, and also included muscle aches, and
severe tiredness. I thought I was getting the flu, since that's
the only time I'd ever had those kinds of pain, but I had no other
flu symptoms (fever, vomiting, or diarrhea).

The next day, I went to my GP who had originally prescribed the
Levaquin to get treatment for the flu symptoms. He said things
didn't add up. I had no fever and my blood count was normal. He
took me off the Levaquin, and substituted Ceftin (of the penicillin
family) for the prostatis problem. He said I did not have the flu.

Two days after my first visit, I returned to my physician and also
made a trip to my heart doctor. In those two days I'd found your
website and learned a lot about quinolone drugs. To my surprise, my
GP agreed that I'd probably had an ADR to Levaquin. He said his
immediate concern was my kidneys. He said he'd seen a couple of
ADRs so severe it resulted in the patients having to go on dialysis
temporarily. He wants me to come in weekly for the next 6 weeks for
urine tests. However, my heart doctor blew off my suspicions of an
ADR to Levaquin. But at least I have my suspicions in his records
now.

It has now been two weeks since I stopped taking the Levaquinn. I
hate to get my hopes up too high, but most of my joint and tendon
pains have ceased for the time being. My job keeps me at a computer
keyboard most of each day, and I still have had some moderate hand,
wrist, and forearm pains. I have stopped most other exercising and
excessive physical work for a few weeks in hopes that it will help
also. I am also taking a calcium supplement for a while.

I hope that mine has been a minimum impact ADR, but I'm not
totally optimistic. I will wait out the next few months, and maybe
even years, dreading more joint/tendon pain, and/or the appearance of
other symptoms. However, my thanks is to you all, for the
information on this forum. Without you sharing your personal
experiences, I might never have even known what symptoms to be alert
for! How many others never even realize they've had an quinolone
ADR, or are never told so by their physicians.

I cannot imagine living through the rest of my life with these
joint/tendon aches and pains, or worse. My heart and my hope goes
out to all of you whose stories I've read here. I am alerting
all my
family and friends of the dangers of this dangerous family of fluro-
quinolone chemicals. I have also filed an Adverse Drug Reaction
report with the FDA and have received a confirmation of receipt from
them. Another thanks to the information on ADR reports on your forum.

Wishing all of you good luck, good graces, and hope for a better new
year.
Thx......................... Dale Y.


Doc 118
2962From: njbeanie24@a...
Date: Sun Dec 24, 2000 0:29pm
Subject: please help!

Hi I just joined this group...My husband is 65 years old,he was in the
hospital last tuesday(12th) for pneumonia...they started giving him
levaquin..On thursday morning he wasn't sure where he was,seemed
disoriented..But they said that happens in the hospital and released him that
afternoon..Well by saturday he was forgetting things and i got him to his
physician on monday..I told the doctor he seemed more disoriented,memory loss
and lack of some motor conmtrols..(he has parkinsons syndrome,but he was just
away 2 weeks before this hunting and going about his regular life)..The
doctor told me to continue the levaquin and just let him sleep..Ok well on
wednesday i couldn't wake him up..i called the ambulance and when they got
here his blood pressure was 90/60...they xrayed his lungs at the er,,said the
pneumonia was clearing nicely,,keep in mind my husband is still sleeping
through all this..they took a cat scan,nothing unusual there..but his blood
enzymes were high,so they wanted to make sure he didn't have a heart
attack..finally he was awake..did more tests,no heart problems..on thursday
he was more alert then i have seen him all week..eating good at the
hospital,,but still memory problems..on friday he was awake but a little
groggy..they checked his kidneys they are fine,,except for a kidney infection
he got there from the cathater..They told me there seems to be an infection
in his blood,but they have to do another blood test to make surer..they also
said since he was admitted his liver enymes have gone up,so now they want to
do an ultra sound on it..Also because his speech started to slur,the are
doing an mra on tues.or weds. to see if there is a blocked artery..in the
meantime,he is sleeping more again..his vitals,,heart rate and blood pressure
are perfect..it just seems weird that 48 hours after starting levaquin,he
started being disoriented and no one cared..a neuroligist who saw him said he
looked drugged to her,,she said she would definately say all the sleeping and
non responsiveness was the medicine,but no one is believing her..They say and
i am quoting.."we give levaquin out like candy here,it's fine" please has
anyone else had similar syptoms..he was such a healthy man 3 weeks ago,it has
me so scared..he took the last levaquin last wednesday(the 20th),,please feel
free to e-mail me personally..not a happy holiday here Vicki

Doc 117
2954From: j9m1s6@a...
Date: Sun Dec 24, 2000 4:32am
Subject: new patient

I'm 33 year old female who excersis(ed) regularly. I began Levaquin
on December 1st of this year. I took 250 mg once a day until the
ninth day and at that point I quit. I was taking it for a tonsil
infection that is still there. After 5 days my hips joints began to
hurt and I just chalked it up to exercise. I have a total of 32
stairs in my townhouse and so needless to say that doesn't help me at
all. I'm still in pain. Over the counter pain medications do not
seem to help at all. Some days are better than others.
I feel like a faker at work. Some days I'm walking ok and others I
don't get up from my desk. I've been drinking tons of water. My
ankles are swelled now and I've taken water pills and avoiding sodium
for that. After reading all this info on this forum, I think I'll
try the Glucosamine. I hope it helps.
I will NOT let this defeat me. I'm way too young and stubborn. Any
and all information will be greatly appreciated. I am going back to
the doctor next week. She'd orginally said that it'd be out of my
system in 5 days. I have noticed bruise like marks come up on my
ankles and knees (which are hurting the most right now). Is that a
common problem? My hands are now beginning to feel the pain but my
hip joints are better.
I'm so glad someone told me about this site. Thank you all and I
want the best for you all.
Jacki



Doc 116
2875From: David Cory <DaveCory@a...>
Date: Sat Dec 9, 2000 5:08pm
Subject: First post to this group

Well....I am not sure how I discovered this newsgroup, I think I
typed "joint pain" into a search engine and it brought me here. It is
sad to find so many people affected in this way, but you cannot
believe how happy I am to find this group. I thought I was going
crazy, or at least aging very fast!

I took Cipro for 28 days for an alleged prostatitis in July 1998.
Since then I have had many of the symptoms described here: muscle
twitching, pains, tingling, visual disturbances, nausea, confusion,
deep depression and anxiety, smelling smoke, to name a few.

Not until I read some of the stories here did I make a connection
between Cipro and the reactions. What a relief ! I thought I had MS
or something else. My guess is that there must be many people
affected who do not know they have an ADR.

Fortunatly, most of the problems have gone. The first reaction was
depression and anxiety. I had never experienced these before and they
were probably the worst. The depression lifted after the first 12
months and the anxiety lasted until recently. About a month ago the
anxiety seemed to disappear suddenly and now I feel my old self again.

The only problem now is the joint pains in the knees, elbows and
particularly the fingers. They come and go, but oddly, since the
anxiety went, the finger joint pains have got worse. Now they are
more painful than at any time before. However, if I had my choice of
joint pains or anxiety, I much prefer the joint pains!

Thanks to all who have posted here. Now that I know this is an ADR I
feel so much relief. I guess I should feel some anger too, but I
don't. Maybe that will come later.

Dave