The widely prescribed antibiotic Levaquin is also called levofloxacin (one is the generic drug name). Much of this information is also relevant for ciprofloxacin (Cipro), gemifloxacin (Factive), moxifloxacin (Avelox), ofloxacin (Floxin), norfloxacin (Noroxin), and other fluoroquinolones, which are sometimes referred to collectively as FQ.
Disclaimer: I not a physician and much below is anecdotal. As it is hard to find useful information online, I have collected what I've found here. If you have more references to add, please feel free to suggest them to me. Also please tell me if (referencing or other) corrections are needed. As I strongly believe these medicines are very dangerous, in part due to the information collected here, there is an emphasis on dangers throughout.
I did not find much online information about how to recover. What little I found is compiled below. Ref. 1 in particular is incredibly helpful. Thanks.
Contraindications (who shouldn't take it--in my opinion--almost everyone!)
How it acts on the body (to understand what might help)
also see the extensive bibliography at floxiehope.com.
Levaquin and other fluoroquinolones are widely prescribed antibiotics for adults. Between 1995 and 2002 in the United States, they were the most common class of antibiotics prescribed for adults. (see Ref.1 below, ref. 6 therein).
Common reasons: respiratory infections, infections after surgery, urinary tract infections, sinusitis, and others. It is no longer (after July 2016) recommended as first line for urinary tract infections or sinusitis because of its dangers.
Many injuries have come to light as their use has become more widespread.
As far as I can tell, these remain the best first line drugs for anthrax (although the letter below by an anthrax treatment physician claims doxycycline is equally potent) and plague.
My doctor told me that "there are plenty of other antibiotics", so for other things besides plague, I strongly advise you see if you can get something else, if levaquin or other fluoroquinolones are suggested to you.
The official US warnings have been updating frequently (see FDA approval history page: past labels, most recent at top, the page keeps moving, so you might have to click "L" then levaquin). The understanding of its dangers is evolving rapidly.
Levaquin now has a "black box" warning, the strongest class of FDA warnings you can have on a medication.
current FDA approved label for Levaquin, click on "label" to get most current warning.
The most recent as of this writing (July 2016) Levaquin label announcement said "an FDA safety review found that both oral and injectable fluroquinolones are associated with disabling side effects involving tendons, muscles, joints, nerves and the central nervous system. These side effects can occur hours to weeks after exposure to fluoroquinolones and may potentially be permanent."
The FDA recommended in a related (July 2016) press release: "Because the risk of these serious side effects generally outweighs the benefits for patients with acute bacterial sinusitis, acute exacerbation of chronic bronchitis and uncomplicated urinary tract infections, the FDA has determined that fluoroquinolones should be reserved for use in patients with these conditions who have no alternative treatment options. For some serious bacterial infections, including anthrax, plague and bacterial pneumonia among others, the benefits of fluoroquinolones outweigh the risks and it is appropriate for them to remain available as a therapeutic option." (FDA announcement, see also here)
There are many, see the FDA black box warning (July 2016), also here, and see Ref.1 below.
tendon: tendinitis, tendinosis, tendon rupture
The risk of rupture has been reported to be very high if you get Achilles' tendinitis with Levaquin (about 25% from Ref.5, 50% of ruptures are not preceded with tendinitis).
cartilage/bone: anthralgia, impaired fracture healing, cartilage lesions
muscle: myalgia, rhabdomyolsis
Peripheral neuropathy
Central nervous system effects
intestinal: C. difficile (also with some other antibiotics)
some evidence for increasing risk of aortal aneurysm and aortal dissection (e.g. Lee,Lee, Chen, Lee, Chen, Chen, Chang, 2015).
People with myasthenia gravis have died.
This list is not complete.
data on injuries and histories
Some lists of different tendinopathy responses (90 patients but detail-how long took medicine, side effects, etc) can be found at this article by Khaliq and Zhanel, collating results from 1966 to 2001. Although anecdotal (millions of people have taken this medicine), it is perhaps useful to see the wide range of reactions and recovery patterns.
The FDA reporting system had 210,705 reported injuries and 2991 fatalities as of writing of this article in 2016 by Kaur et al, from the Southern Network on Adverse Reactions (SONAR) project (reference 3). As these are self reports, this information has different authority from the other medical studies.
Some more statistics here (2010 article, reference 2)
Description of action of levaquin, 2011 study, also paraphrased below.
A Washington Post news article reporting patient effects and medical community views about fluoroquinolones in 2015 (the black box warnings have been updated twice since this news article was published), see also this Consumer Reports article.
For the stories of a few patients in detail who had catastrophic responses, see these case reports, there are many other articles out there. If you are injured by it already, please do not read these case studies, or others online, they are really terrifying! Instead, please go to below.
Letter to the Senate Committee on Health, Education & Labor here, by the late author of the book below, a physician who published studies on fluoroquinolones in medical journals.
FDA reports, many media (news, etc.) articles and many research articles are listed at the extensive bibliography at https://floxiehope.com/fluoroquinolones-links-resources/.
A suggestion: if you are considering taking it, please read the links above, or see the movie below (related to the lawsuit which got the black box warning on these drugs), read the the books here and here, or google 'levaquin tendinitis'.
Not all doctors are aware of these issues.
Both drugs.com and rxlist.com now list these reactions, however in the latter the severe effects take a bit of work to find. See also drugwatch.com which contacted me to be included, they emphasize the serious (and life threatening) permanent effects and black box warnings.
I have dealt with several MD's and pharmacists who think that the injuries to athletes are because they use their muscles more. My impression was that they thought the athletes were damaged ahead of time and didn't know it. This is not what is seen in the above reports, where the damage can be extreme. ( I'm currently leaning towards the idea that athletes are more likely to have depleted magnesium, making the loss of what magnesium is left in the body more dangerous, but I do not know.)
These are dangerous medications which can affect people, adversely and sometimes permanently, even without known previous risk factors. (see FDA label page 59)
Fluoroquinolones can be dangerous to anyone, as noted above. To repeat, if you are a healthy person with no other health issues, besides the condition for which the fluoroquinolone is being prescribed, you can still be at risk. Here is the list of potential risk factors from 1 below, their table 3. Highlighting mine.
Increasing age
Systemic corticosteroid use
Participation in a sport*
Magnesium deficiency*
Trauma (tendon or joint)
History of organ transplantation
End-stage kidney disease
Hemodialysis
Osteoarthritis
Rheumatoid arthritis
Psoriatic arthritis
Systemic lupus erythematosus
Ankylosing spondylitis
Reiter syndrome
Polymyalgia rheumatica
Ulcerative colitis
Crohn disease
Diabetes mellitus
Hyperparathyroidism
Hypothyroidism
*Apparently intense athletic activity depletes magnesium, so these two ways of being susceptible may be identical. (A blood test is not that useful for indicating one's magnesium levels, as most is found in bones, tendons, etc.)
From Mayo Clinic physicians, in the article Ref. 1 below:
"Athletes should avoid all use of fluoroquinolone antibiotics unless no alternative is available."
If you take them with steroids, the risk of injury is increased by a factor of 46! (See this review.) Ironically, often fluoroquinolones are prescribed for pneumonia, at the same time an inhaler is prescribed.
The July 2016 FDA label (sec. 8.3) also says that if you are nursing, either stop nursing or don't take Levaquin.
In order to know what to do and to figure out what is best for you, it is perhaps helpful to know how it acts. Below is my understanding of Ref 1 below:
Levaquin and other fluoroquinolones bind to the Mg and other elements in the body, e.g. tendons, cartilage, bones, etc. and thus take them out of your body, weakening or otherwise damaging the tendons, cartilage, bones, etc. where your body had incorporated these elements.
There have been traces found in animals up to 20 weeks after dosage, but not after that. It seems to imply that after 20 weeks, the levaquin isn't doing anything new, but the weakened tendons, etc., could be further injured just due to their more fragile state.
One dose is enough to do severe damage (not from the article, my experience, and confirmed by a physician in Oakland)
Onset has been recorded from 2 hours after first dose (tendon rupture) to 6 months after stopping. Some effects manifest suddenly-just anecdotal here (my own experience, 2 weeks after single dose, severe, intense pain and difficulty moving several different arm and leg joints, both sides, which woke me up suddenly at 5 am).
Duration of effects: unknown, some seem to be permanent.
median and average reactions very different, responses vary enormously.
To recap, what seems to happen (given my untrained understanding):
it stays in your body up to 20 weeks (or does in animals at least). The effects can last longer and/or appear later, again, my understanding is that the injuries may not be evident immediately, or the tendons or other parts of your body might be weakened, leading to later damage. An analogy I have (I am not a physician though!) is that your body is like limestone and this drug acts like water on it, pulling out pieces (Magnesium in particular) and then leaving what remains considerably weaker (such as limestone with holes in it). Then you have a damaged muscle or tendon etc. which needs repair. For the damaged limestone, water is gone. If it has been a while since you took the levaquin, the levaquin isn't in your system. But the damage is there until it is healed. So the damage is what is treated. (The body's mechanisms to repair itself can also be damaged, so it can be very slow going5.)
I am not a physician: unreferenced suggestions for recovery are either my experience or opinion or those reported by others online or in person to me.
If you are taking it and feel any pain, please stop immediately!
(This is on the FDA warning too, actually.)
Then try to find a knowledgeable doctor who knows how to help. Many general physicians know the fluoroquinolones are dangerous but do not know how to help. However, a good sports medicine doctor can diagnose the damage, and they and physical therapists can treat the damage. There is one caveat--it seems that the pain may not be due to something a sports medicine doctor will be familiar with, as it is not repetitive stress injury, but (if I understand rightly, from Cohen's book) very small scale tissue damage. It may be spread out over a large region of the tendon, but on very small scales. He suggests doing a punch biopsy to check the tissue on small scale to see the damage. Or you can just notice that it hurts but that it doesn't feel, to a person used to feeling tendon damage with their hands, like the normal larger sized injuries. It is important to know what kind of damage there is as different kinds call for different responses.
There is a community sourced list of some doctors who are recommended by others dealing with fluroquinolones (the books here and here were also written by medical professionals), the one here has a list of people that might be available for consulations.
See the "Management" table (table 4) in Mayo clinic article below.
Treat the symptoms of the levaquin (again, the levaquin is gone after 20 weeks).
for pain:
Ref 1 notes that some of the effects are like those of rheumatoid arthritis. People with rheumatoid arthritis often suggest turmeric for the pain (saag paneer or other cooked versions are better than pills, they bring out the potency, one person tells me that it is absorbed better if consumed with fats more generally). See e.g. this guide from the University of Maryland Medical Center to get some idea of recommended maximum amounts of turmeric. One can overdo it.
(It is possible that other things which help with rheumatoid arthritis would help also, I am ignorant about what things help with rheumatoid arthritis symptoms more generally.)
Other things I have heard recommended for pain are EGCG (found in green tea) and Omega-3's.
for muscle and tendon damage:
Fluroquinolones, including Levaquin, damage collagen. So doing what athletes do to repair damaged collagen is the best thing to do. However, recovery from fluoroquinolone injuries can be slower because the parts of one's body that aid the healing may also be damaged.5 It is very helpful to have a doctor or physical therapist help you to understand how to proceed as tendinitis and tendinosis require different actions. You can get both at the same time from Levaquin. A doctor (and for instance an ultrasound) can see the difference between these two.
Tendinitis is inflammation and is helped by coldness, to reduce the inflammation. Often NSAIDs such as ibuprofen help.
Tendinosis comes from muscles and tendons being weakened (one example I read said they were all tangled) and often needs special exercises and heat to improve healing and the growth of collagen. For this NSAIDs don't help, some doctors even say NSAIDs are harmful in this case. Collagen takes a while to regrow and repair, one reference said 100 days. You can do exercises to make sure it repairs properly.
Since a lot of athletes have these kinds of injuries, there is a lot of advice out there.
For fluoroquinolones in particular, it seems useful to replenish magnesium
(note: It is possible to take too much and harm yourself. More is not necessarily better, especially if you have kidney problems or other health conditions that might affect your ability to process and get rid of excess magnesium. If you have any worries, please check with a doctor!)
In diet:
For example, 'Calm' Magnesium supplement by Natural Vitality, but be careful, it is a laxative!
soaking in Epsom salts
Some sources recommend applying magnesium oil directly to the skin, I don't know much about pros/cons or amounts for this.
Some comparison of different kinds of magneisum is in Ref. 6.
eat from a diet to support tendon growth-lots of suggestions online, many runner references have advice. Again, note that some of the pain may be levaquin related rather than normal tendon damage, and thus that turmeric, egcg and omega-3's may be of use.
Point of confusion for me:
One case study (in book below) found improvement by going to a low oxalate diet (such as is done to prevent kidney stones). Many of the foods which help build tendons are high oxalate. So I am not sure what one does....
For both:
There are detailed fluoroquinolone recovery dietary/vitamin and other suggestions in Ref. 7 and in Ref. 6. In addition to magnesium, the latter suggests vitamins E, zinc, and also mentions other things (NAC), along with the supporting evidence.
acupuncture (I have gotten this advice from a huge number of people, md's to dancers, it seems to help.) In my own experience, having a very skilled person do it makes all the difference.
Trigger point therapy (a kind of massage, here is a workbook, it helps increase circulation for e.g. tendinosis)
Acupressure, another form of self massage (see, for instance, videos and books by Michael Reed Gach)
Yoga for tendinitis exists, find if any works for you.
Severe neuropathy- I have not seen much evidence on how to help except one article where someone did try Glutathione infusions. This is also found in e.g. milk thistle, cruciferous vegetables, etc. To get the strong helpful effects this person had infusions though, not just a change of diet. It is just one story but it is a happy one! There is more discussion (not conclusive) in Ref. 7.
There are alternative medicine suggestions also at survivingcipro.com, a support group page (also listed below).
There is a UCSD study underway, go here for more information.
There is a support network here, called Floxie Hope. A lot of it is people telling their stories, which are often terrifying. If you are dealing with side effects and uncertain of the extent, it may not be the best place to start. The suggestions above may be more constructive (one of the articles at this network's site starts with "stop reading this page"!).
Also there is survivingcipro.com which seems to have more positive treatments, but I haven't gone through it in detail (yet).
FDA list of levaquin labels, which includes official FDA warnings
1 Hall, Finnoff, Smith,
2011
This is, to me, a gold mine of information on how it acts and thus how to understand the damage (and try to deal with it). By three Mayo Clinic physicians.
2 Kim, G, Del Rosso, J.Q.,
The Risk of Fluoroquinolone-induced Tendinopathy and Tendon Rupture What Does The Clinician Need To Know?
2010
list of dangers and statistics of injuries.
3 Kaur, K, et al,
2016
adverse reactions collated and published in a cancer journal (PMID:26955658, DOI: 10.12788/jcso.0167 )
4 Khaliq, Y., Zhanel, G.G.
Fluoroquinolone-Associated Tendinopathy: A Critical Review of the Literature
2003 This is an old and it seems to me somewhat out of date review.
More data has become available since 2003 and the dangers have been recognized as more serious as a result (as can be seen in the change in FDA warnings over time)
5 Lewis, T., Cook, J.,
2014
Journal of Athletic Training 49(3):422-427 doi: 10.4085/1062-6050-49.2.09
6 There is also a book,
Cohen, Jay S., MD,
How We Can Halt The Cipro &Levaquin Catastrophe: The Worst Medication Disaster In U.S.
October 25, 2015,
by a physician who studied patient side effects of cipro and other fluoroquinolones for 16 years . Includes results from treatments which have had some success, including dietary suggestions, and his thoughts as someone trained in pharmacology for why they might or might not work in other cases. Very useful.
There is an additional bibliography by him in a letter he wrote to The United States Senate Committee on Health, Education, Labor and Pensions, linked at http://www.medicationsense.com/articles/2014/letter.php.
7 The Fluoroquinolone Toxicity Solution has dietary and vitamin suggestions, was useful to me. I was initially put off by the tone of the advertisement for it. The authors combine many different suggestions in the literature to come up with a big picture of how to heal more quickly. They also have a list of people you can call to consult (phone consultations), at the beginning.
8The movie
Certain Adverse Events
is a documentary by Nancy Edwards which has won awards and showings at many film festivals. I have not yet seen it.
The website is here:
http://www.certainadverseevents.com/home_page.html, parts are also on YouTube
2013
It follows cases and I believe also documents the successful Public Citizen lawsuit against the FDA in 2008 to change the warning labels on fluoroquinolones. It also discusses, more generally, the way drugs are approved in the US (which apparently is enough to want you to never take medicine again!).
Other bibliographies
There is an extensive bibliography at https://floxiehope.com/fluoroquinolones-links-resources/:
FDA reports, news articles and medical articles
Also at end of letter by Jay Cohen (also linked above)
Thank you to Drs. M. Lewis and K. Marquis and N. Rakela, DOM, LAC, for advice and some of the links.
Disclaimer again: I am not a physician. I think this medicine is very dangerous and the page is designed to both document the reasons I think it is dangerous and to share suggestions on ways to recover. I have found much of this information on the internet (linking the statements which are published in the medical literature). The suggested treatments are just suggestions which I have found useful or have heard are useful. This page does not represent the views of the University of California or any agency which has funded my professional research (which is completely unrelated to this topic). --J. Cohn