Cipro, Levaquin, Antibiotics: Side Effects or Not?

For information gathering purposes:

I am interested if you are someone with a connective tissue disorder such as Ehlers-Danlos Syndrome, Fibromyalgia, etc. that has taken a strong antibiotic known as a fluoroquinolone.

Recently I took Cipro. Luckily, for just two days. I quickly experienced major tendon and joint pain like I have never felt before. With a little online poking and questioning I came across the term "floxed" and realized there are many people out there that have been affected by Cipro and Levaquin.

If you are someone who has a connective tissue disorder and has taken one of these medications I am interested if this medication either affected you or not.

I would like to know:
what disorders you believe yourself to have
which medication
how long did you take it
what symptoms did you experience
how soon did you experience these symptoms
and long did you experience these symptoms
If you have found an alternative antibiotic I am also interested. I am equally interested if these medications had no negative effects.

This information is only being used to possibly write a short article. If I am able to use your information and/or name, please let me know for either. I have no problem with leaving everything anonymous.

Thank you for your time and sharing. I do not wish this horrible experience on anyone.
-Christine

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39 replies. Join the discussion

I can't take cipro. I took it once and it made me go numb all over my body except for my skin which burned like the sun as if it was on fire. So, the doc said that was an allergic reaction and he gave me something different. That was the pill form. I don't know if this is related, but I did have a cateract removed and a prosthetic lens installed in my right eye. The eye drops they used were the same med as is in the cipro and now my prosthetic lens is free floating in my eye because all the ligaments that are supposed to hold it in place broke. I don't know if the ligament and tendon damage is from the cipro eye drops, but it could be. I have Ehlers-Danlos. Possibly both classical type and hypermobile type or on or the other. The geneticist is not sure which and says I might have both possibly. If I do have the classical type, it is type II rather than type I.

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Hello Grattituded,

Yep, this is indeed a common complaint. Here is where it shows up in research...at least a few studies anyway:


"More on Fluoroquinolone Antibiotics and Tendon Rupture" New England Journal of Medicine, http://www.nejm.org/doi/full/10.1056/nejm199501193320319

"Partial Achilles Tendon Ruptures Associated with Fluoroquinolone Antibiotics: A Case Report and Literature Review" http://fai.sagepub.com/content/17/8/496.short

"The Effect of Ciprofloxacin On Tendon, Paratenon, and Capsular Fibroblast Metabolism" http://ajs.sagepub.com/content/28/3/364.short

"Fluoroquinolone-Associated Tendinopathy: A Critical Review of the Literature" http://cid.oxfordjournals.org/content/36/11/1404.short

While none are specific to EDS, having defective collagen already puts us at risk for tendon ruptures.

You can message other EDSers who have had the same symptoms as you or tendon ruptures due to this class of antibiotics. With having EDS, we should not take these antibiotics if there is any other option...sometimes there is not another option and can be life or death so in that case we do have to take them.

Here are past discussions...at least a few anyway:

http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ forgetful-to-take-fluoroquinolones/

http://www.inspire.com/groups/ehlers-danlos-national-foundation/journal/fda -8-16-13-update-re-fluoroquinolone-drugs/

http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ tendinopathy-laser-treatment/

http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ levaquin-blues/

I am sorry you had that reaction. I do have a flag on my medical records to avoid this class of medications if possible due to my EDS.

Gentle hugs...

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I was given Levaquin and about an hour after taking the first dose, I became extremely sick. I became incredibly nauseous and my vision was jumping side to side - this lasted for two days after taking only that 1 dose. I also have had on my charts that I cannot take fluoroquinalones because of the possible tendon rupture and EDS, but that doctor (who was horrible, by the way) prescribed it to me anyway without me realizing what it was. The only benefit to that doctor prescribing it to me was that I had this reaction and now can without a doubt say that I am allergic...

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I have JHS & a UCTD. I took Cipro in February for 10 days and experienced mildly annoying increased pain in my Achilles tendons & ankles. It started immediately and lasted about 3-4 months. No major problems or long-term effects.

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I took Levaquin! Within 24 hrs of starting it my eyes felt like someone through sand into them! Seriously HURT to even blink. Then the whites of my eyes (both eyes) became blood red to the point that there was no whites left and I looked like something out of a sci-fi movie! It hurt to move my eyes at all. I also experienced a intense ache type of discomfort within the eye balls them self. I now list Levaquin as medication I am allergic to.

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I took Cipro for a week after getting an overseas infection in December 2003 (maybe took the Cipro Jan. 2004). Can't remember side effects at the time. It might be entirely unrelated but I have had 3 arthroscopic surgeries since then. Badly torn up shoulder tendons that didn't heal after first surgery and had to be redone, then torn meniscus in knee. Surgeries were done in 2009, 2010, and 2013. That's a long time delay, so cause and effect is questionable. My diagnosis is CTD, Undifferentiated.

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I took Levaquin for 10 days in March 2004. It was prescribed for pneumonia. I don't remember all of the side effects I endured, but some of those I do remember, I apologize, but I don't want to share them on a shared-with-the-public thread. What I will share is that it did affect my right knee and shoulder and caused my symptoms to become progressively and permanently worse. Other long-lasting problems that I still deal with today are poly neuropathy and antibiotic allergy. I was confused about the neuropathy when it began during this time but I read that this class of antibiotics can cause nerve death and problems. I've been prescribed 2 courses of a different class of antibiotics, ones I could take with no problems before the Levaquin course, but now can longer take because of serious allergic reactions. I have HEDS, dysautonomia, scoliosis, lordosis, osteoarthritis, poly-neuropathy, to name the majority but not the all.

Will your article be available online for us to read?

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I took Levoquin. It was probably about 5 - 7 years ago now. I can't remember how long I was on it, or what it was for.

However, I came down with extremely severe Achilles tendonitis in my left leg/heel. It was so bad that I had to wear a boot for a while, which kept from further aggravating the tendonitis, but gave me bursitis just below my left knee. The tendonitis very slowly lessened over the following 6 months to a year, but It has left me with a chronic sore spot where the tendon inserts on my heel, and at times it feels like full-blown tendonitis is trying to recur, so I baby it for a while and it gets better.

Hope this helps.

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Thank you all for reaching out.

Slap a Smile On, I cannot thank you enough for the articles and posted threads. I've been poking around already, but your information is an added benefit! I felt the need to start a new thread as I was interested if anyone didn't have a reaction to these medications.

Everyone else, and anyone else that will reply,
Obviously, thank you for your time and sharing your stories. It's amazing the widespread effects this class of drugs has on us. The doctor that prescribed me the medication clearly knew I have EDS and fibromyalgia, so I am just trying to spread the word about the possible effects. BethJordan, the article I am working on is for online publication. I can put any links, if I have luck, to this thread.

Thanks!

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....but I have taken levaquin several times, for 6 weeks due to severe diverticulitis, and two weeks each for pneumonia and blood poisoning. The only side effect I noticed was nerve pain on the top of my foot if it is run under the rungs of the counter stool while I sit, for example, and in my little toe. Very hot and severe pain, but it only last for the time that the foot or toe is actually being touched.

I am becoming allergic to antibiotics, notably cephalosporins, so I don't have much choice. I'm lucky I can take it.

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>>the article I am working on is for online publication. I can put any links, if I have luck, to this thread.<<

Cool. Thanks.

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Well, I have no personal experience with these drugs, but I know a couple of things about them. One thing I know is that Levaquin is a vitamin K inhibitor, and as such it is a blood thinner. I would imagine that might be particularly troublesome for people with VEDS. Just putting that knowledge out in case anybody gets some insight out of it.

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flouroquinalines were a contributor to my diagnosis, as they severely escalated my problems to the point that the doctors were certain I had Myasthenia Gravis. glad to talk more in a non public thread

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Have flexible type and heart is affected, really sensitive skin that tear easily, degeneration disease for almost all joints..cannot take these as my tendons hurt excruciatingly badly. Also extreme stomach pain. No problem with regular penicillin. I believe these are 2nd and 3rd generation derivatives.

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A quick search for "antibiotic" on http://edsinfo.wordpress.com finds this article:

Fluoroquinolones Antibiotic Alert – especially with EDS
http://edsinfo.wordpress.com/2013/08/28/fluoroquinolones-antibiotic-alert-e specially-with-eds/

@SASO - I hope you don't mind if I publish your links on the EDSinfo blog as well.

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It's fine....

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Christine,

First of all - if you are still suffering the effects of FQ toxicity things as easy as you can and try to eat well. FQs are hideous in the early stages, but you will get better in time.

I took Cipro for 2 days (4 x 500mg pills) last January and it set off a system wide series of problems that scared me half to death. Prior to ingesting this poison I had a diagnosis for mild joint hypermobility that only prevents me doing regular running, (causes knee pain) and requires me to use wrist supports when using a computer.

Initial symptoms including stabbing pain in knee tendons and all joints cracking and popping in particular but after discontinuing 'treatment' a whole range of other things happened:

- Stabbing pains in knee, achilles, tendons.
- Cracking and popping joints
- Fuzzy vision and colour disturbance in peripheral vision.
- Eye floaters
- Stabbing eye pain.
- Stabbing inner ear pain
- Tinnitus
- All over pain/tightness in muscles
- Insomnia
- Intolerance to caffeine and chamomile syptomatic of maxxed-out liver pathways
- Extreme anxiety
- Borderline hallucination
- Stabbing pain in nerves of teeth
- Numbness/hotness in toes/feet
- Numbness in hands
- Depersonalisation
- Inability to sweat
- Loss of appetite

The most debilitating aspect of this was that for the first couple of weeks I was hardly able to walk at all due to pain/discomfort in my knees. After almost 10 months the only remaining symptoms I have are eye floaters, occasional hot toes (usually after a bath) and some occasional discomfort in knee tendons. Considering I could not walk 100 yards for the first week or so, I consider myself very lucky indeed.

Most of the symptoms resolved (or had begun to substantially subside) within 6 weeks - 3 months. I could drive again after about 1 month, walk a mile after about 2 months, and could finally run up stairs two at a time with no knee pain after 6 months. I've had a couple of relapses after being ill with unrelated bugs, 'cycling' of symptoms like this seems to happen to a lot of people. If you have not already done so, get hold of the Flox report, which is the best info I have found. However, be aware that if you're in the early stages of fluoroquinolone toxicity, reading it now will just scare you, and probably unnecessarily, so get someone you trust to read it for you. At 6 months you can use it to assess the severity of your reaction, which after only two days of 'medication' is likely mild, and from which you can most likely make a very good recovery (Please note, I mean 'mild' in the context of FQs, not 'mild'!)

I tried a range of supplements, some of which I think helped, but noone really knows at this point with FQs. Epsom salt baths (not too hot) helped me a lot in the early days to cope with the tendon/muscle pain, and transdermal pure magnesium spray is worth trying. I believe FQs particularly hurt people who are magnesium deficient and (in males) possibly low in testosterone, but despite the drug companies lies, there is a lot of evidence that suggests they damage everyone, every time they are taken and that the effects are cumulative.

My advice to anyone reading this is never touch these drugs unless there is no alternative, they are just not worth the risk, and the incidence of bad reactions is waaay higher than advertised. Also, do not think that because you have taken FQs in the past and been ok, you are fine to take them in the future - the internet is full of horrible stories of people who thought that, only to break down with catastrophic and largely irreversible damage after taking multiple courses of FQs.

If anyone would like any more info feel free to email me.

Paul

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Thanks again, everyone!

Jespere, I didn't realize this class acts as a Vita. K inhibitor. I'll be looking into this even more so thank you. With a quick search I was also coming across information about upping your magnesium after using these medications. So, Paul, you might be onto something there, about the magnesium. I have a magnesium cream as well as epsom salts, so I'll be upping my dose.

Paul, can't thank you enough for your post. Well said. I'm sorry to hear about the battle you experienced. Just the state of uncertainty alone gives you that "depersonalization." I am well aware, and thankful, that I had a mild reaction. I was just shocked once I started to come across other EDSers that also had problems with the medication. As if there should be a warning to all of us, before it's too late. I know for most doctors who write these scripts, a patient with EDS may be few and far between, but with the horrible effects it has on us, this needs to be known as a possible contraindication.


Thanks wholeheartedly,
Christine

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Hello Christine,

It is about prescribing doctors reading the black box warnings on what they prescribe and adding 1 + 1. Every doctor should be able to do this.

In 2008, FDA placed black box warnings on this class of antibiotics for tendonitis and ruptured tendons...patients who have tendon issues are one of the groups for whom this class should only be used in dire situations: http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatie ntsandproviders/ucm126085.htm

In 2013, FDA added to the black box warning the increased incidence of Peripheral neuropathy in those prescribed this class of antibiotic: http://blogs.naturalnews.com/new-fda-warning-for-cipro-levaquin-avelox-perm anent-peripheral-neuropathy-mixed-emotions/

And if a doctor just has the most basic understanding of EDS that it causes problems with connective tissue and that tendons are connective tissue..... this is 1 + 1 = 2

Gentle hugs...

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Wow! I kind of feel lucky that the GI side effects from Levaquin were so bad that I stopped taking it before my tendons ruptured! I will share my incredibly disgusting yet hopefully heartwarming story, even though this is a public thread :P

In 2006, way before I was diagnosed with EDS, I was prescribed Levaquin for a skin infection. I took it for 2 days with increasing nausea and burning stomach pain (which is my typical reaction to most antibiotics). On the third day, I was my husband's grandma's house. Only he wasn't my husband at that point - just a guy I'd been dating for a few months. I was standing in the kitchen, and was suddenly hit by a wave of stomach pain. I started to head for the bathroom, but it was too late. I pooped. Luckily, I had a change of clothes with me, and Mr. Tigerbomb has always been uniquely understanding of my GI problems. Like, to the point of sainthood. After that, I was certain of two things: the guy was a keeper, and I needed to stay far away from Levaquin.

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