Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Article does not mention MG -- but this is a killer of MGers. In a "small world" coincidence, the guy from CCNY, Lloyd Balch, worked in my office for several years after graduation before moving on to another CUNY College. He's a great guy and this is heartbreaking. ~Joe
http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/
Popular Antibiotics May Carry Serious Side Effects
By JANE E. BRODY
Antibiotics are important drugs, often restoring health and even saving lives. But like all drugs, they can have unwanted and serious side effects, some of which may not become apparent until many thousands of patients have been treated.
Such is the case with an important class of antibiotics known as fluoroquinolones. The best known are Cipro (ciprofloxacin), Levaquin (levofloxacin) and Avelox (moxifloxacin). In 2010, Levaquin was the best-selling antibiotic in the United States.
But by last year it was also the subject of more than 2,000 lawsuits from patients who had suffered severe reactions after taking it.
Part of the problem is that fluoroquinolones are often inappropriately prescribed. Instead of being reserved for use against serious, perhaps life-threatening bacterial infections like hospital-acquired pneumonia, these antibiotics are frequently prescribed for sinusitis, bronchitis, earaches and other ailments that may resolve on their own or can be treated with less potent drugs or nondrug remedies or are caused by viruses, which are not susceptible to antibiotics.
In an interview, Mahyar Etminan, a pharmacological epidemiologist at the University of British Columbia, said the drugs were overused by lazy doctors who are trying to kill a fly with an automatic weapon.
Dr. Etminan directed a study published in April in The Journal of the American Medical Association showing that the risk of suffering a potentially blinding retinal detachment was nearly fivefold higher among current users of fluoroquinolones, compared with nonusers. In another study submitted for publication, he documented a significantly increased risk of acute kidney failure among users of these drugs.
The conditions Dr. Etminan has studied are relatively easy to research because they result in hospitalizations with diagnoses that are computerized and tracked in databases. Far more challenging to study are the array of diffuse, confusing symptoms suffered by fluoroquinolone users like Lloyd Balch, a 33-year-old Manhattan resident and Web site manager for City College of New York.
In an interview, Mr. Balch said he was healthy until April 20, when a fever and cough prompted him to see a doctor. Nothing was heard through a stethoscope, but a chest X-ray indicated a mild case of pneumonia, and he was given Levaquin. Although he had heard of problems with Levaquin and asked the doctor if he might take a different antibiotic, he was told Levaquin was the drug he needed.
After just one dose, he developed widespread pain and weakness. He called to report this reaction, but was told to take the next dose. But the next pill, he said, eviscerated him, causing pain in all his joints and vision problems.
Debilitating Side Effects
In addition to being unable to walk uphill, climb stairs or see clearly, his symptoms included dry eyes, mouth and skin; ringing in his ears; delayed urination; uncontrollable shaking; burning pain in his eyes and feet; occasional tingling in his hands and feet; heart palpitations; and muscle spasms in his back and around his eyes. Though Mr. Balchs reaction is unusual, doctors who have studied the side effects of fluoroquinolones say others have suffered similar symptoms.
Three and a half months after he took that second pill, these symptoms persist, and none of the many doctors of different specialties he has consulted has been able to help. Mr. Balch is now working with a physical therapist, but in a phone consultation with Dr. David Flockhart, an expert in fluoroquinolone side effects at the Indiana University School of Medicine, he was told it could take a year for his symptoms to resolve, if they ever do disappear completely.
Guidelines by the American Thoracic Society state that fluoroquinolones should not be used as a first-line treatment for community-acquired pneumonia; it recommends that doxycycline or a macrolide be tried first. Mr. Balch didnt know this, or he might have fought harder to get a different antibiotic.
Adverse reactions to fluoroquinolones may occur almost anywhere in the body. In addition to occasional unwanted effects on the musculoskeletal, visual and renal systems, the drugs in rare cases can seriously injure the central nervous system (causing brain fog, depression, hallucinations and psychotic reactions), the heart, liver, skin (painful, disfiguring rashes and phototoxicity), the gastrointestinal system (nausea and diarrhea), hearing and blood sugar metabolism.
The rising use of these potent drugs has also been blamed for increases in two very serious, hard-to-treat infections: antibiotic-resistant Staphylococcus aureus (known as MRSA) and severe diarrhea caused by Clostridium difficile. One study found that fluoroquinolones were responsible for 55 percent of C. difficile infections at one hospital in Quebec.
Fluoroquinolones carry a black box warning mandated by the Food and Drug Administration that tells doctors of the link to tendinitis and tendon rupture and, more recently, about the drugs ability to block neuromuscular activity. But consumers dont see these highlighted alerts, and patients are rarely informed of the risks by prescribing doctors. Mr. Balch said he was never told about the black-box warnings.
Lack of Long-Term Studies
No one knows how often serious adverse reactions occur. The F.D.A.s reporting system for adverse effects is believed to capture only about 10 percent of them. Complicating the problem is that, unlike retinal detachments that were linked only to current or very recent use of a fluoroquinolone, the drugs adverse effects on other systems can show up weeks or months after the treatment ends; in such cases, patients symptoms may never be associated with prior fluoroquinolone therapy.
No long-term studies have been done among former users of these antibiotics. Fibromyalgia-like symptoms have been associated with fluoroquinolones, and some experts suggest that some cases of fibromyalgia may result from treatment with a fluoroquinolone.
A half-dozen fluoroquinolones have been taken off the market because of unjustifiable risks of adverse effects. Those that remain are undeniably important drugs, when used appropriately. But doctors at the Centers for Disease Control and Prevention have expressed concern that too often fluoroquinolones are prescribed unnecessarily as a one size fits all remedy without considering their suitability for different patients.
Experts caution against giving these drugs to certain patients who face higher than average risks of bad reactions children under age 18, adults over 60, and pregnant and nursing women unless there is no effective alternative. The risk of adverse effects is also higher among people with liver disease and those taking corticosteroids or nonsteroidal anti-inflammatory drugs.
When an antibiotic is prescribed, it is wise to ask what the drug is and whether it is necessary, what side effects to be alert for, whether there are effective alternatives, when to expect the diagnosed condition to resolve, and when to call if something unexpected happens or recovery seems delayed.
At the same time, when an antibiotic is appropriately prescribed, it is extremely important to take the full prescription as directed and not to stop treatment when the patient simply begins to feel better.
http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/
Popular Antibiotics May Carry Serious Side Effects
By JANE E. BRODY
Antibiotics are important drugs, often restoring health and even saving lives. But like all drugs, they can have unwanted and serious side effects, some of which may not become apparent until many thousands of patients have been treated.
Such is the case with an important class of antibiotics known as fluoroquinolones. The best known are Cipro (ciprofloxacin), Levaquin (levofloxacin) and Avelox (moxifloxacin). In 2010, Levaquin was the best-selling antibiotic in the United States.
But by last year it was also the subject of more than 2,000 lawsuits from patients who had suffered severe reactions after taking it.
Part of the problem is that fluoroquinolones are often inappropriately prescribed. Instead of being reserved for use against serious, perhaps life-threatening bacterial infections like hospital-acquired pneumonia, these antibiotics are frequently prescribed for sinusitis, bronchitis, earaches and other ailments that may resolve on their own or can be treated with less potent drugs or nondrug remedies or are caused by viruses, which are not susceptible to antibiotics.
In an interview, Mahyar Etminan, a pharmacological epidemiologist at the University of British Columbia, said the drugs were overused by lazy doctors who are trying to kill a fly with an automatic weapon.
Dr. Etminan directed a study published in April in The Journal of the American Medical Association showing that the risk of suffering a potentially blinding retinal detachment was nearly fivefold higher among current users of fluoroquinolones, compared with nonusers. In another study submitted for publication, he documented a significantly increased risk of acute kidney failure among users of these drugs.
The conditions Dr. Etminan has studied are relatively easy to research because they result in hospitalizations with diagnoses that are computerized and tracked in databases. Far more challenging to study are the array of diffuse, confusing symptoms suffered by fluoroquinolone users like Lloyd Balch, a 33-year-old Manhattan resident and Web site manager for City College of New York.
In an interview, Mr. Balch said he was healthy until April 20, when a fever and cough prompted him to see a doctor. Nothing was heard through a stethoscope, but a chest X-ray indicated a mild case of pneumonia, and he was given Levaquin. Although he had heard of problems with Levaquin and asked the doctor if he might take a different antibiotic, he was told Levaquin was the drug he needed.
After just one dose, he developed widespread pain and weakness. He called to report this reaction, but was told to take the next dose. But the next pill, he said, eviscerated him, causing pain in all his joints and vision problems.
Debilitating Side Effects
In addition to being unable to walk uphill, climb stairs or see clearly, his symptoms included dry eyes, mouth and skin; ringing in his ears; delayed urination; uncontrollable shaking; burning pain in his eyes and feet; occasional tingling in his hands and feet; heart palpitations; and muscle spasms in his back and around his eyes. Though Mr. Balchs reaction is unusual, doctors who have studied the side effects of fluoroquinolones say others have suffered similar symptoms.
Three and a half months after he took that second pill, these symptoms persist, and none of the many doctors of different specialties he has consulted has been able to help. Mr. Balch is now working with a physical therapist, but in a phone consultation with Dr. David Flockhart, an expert in fluoroquinolone side effects at the Indiana University School of Medicine, he was told it could take a year for his symptoms to resolve, if they ever do disappear completely.
Guidelines by the American Thoracic Society state that fluoroquinolones should not be used as a first-line treatment for community-acquired pneumonia; it recommends that doxycycline or a macrolide be tried first. Mr. Balch didnt know this, or he might have fought harder to get a different antibiotic.
Adverse reactions to fluoroquinolones may occur almost anywhere in the body. In addition to occasional unwanted effects on the musculoskeletal, visual and renal systems, the drugs in rare cases can seriously injure the central nervous system (causing brain fog, depression, hallucinations and psychotic reactions), the heart, liver, skin (painful, disfiguring rashes and phototoxicity), the gastrointestinal system (nausea and diarrhea), hearing and blood sugar metabolism.
The rising use of these potent drugs has also been blamed for increases in two very serious, hard-to-treat infections: antibiotic-resistant Staphylococcus aureus (known as MRSA) and severe diarrhea caused by Clostridium difficile. One study found that fluoroquinolones were responsible for 55 percent of C. difficile infections at one hospital in Quebec.
Fluoroquinolones carry a black box warning mandated by the Food and Drug Administration that tells doctors of the link to tendinitis and tendon rupture and, more recently, about the drugs ability to block neuromuscular activity. But consumers dont see these highlighted alerts, and patients are rarely informed of the risks by prescribing doctors. Mr. Balch said he was never told about the black-box warnings.
Lack of Long-Term Studies
No one knows how often serious adverse reactions occur. The F.D.A.s reporting system for adverse effects is believed to capture only about 10 percent of them. Complicating the problem is that, unlike retinal detachments that were linked only to current or very recent use of a fluoroquinolone, the drugs adverse effects on other systems can show up weeks or months after the treatment ends; in such cases, patients symptoms may never be associated with prior fluoroquinolone therapy.
No long-term studies have been done among former users of these antibiotics. Fibromyalgia-like symptoms have been associated with fluoroquinolones, and some experts suggest that some cases of fibromyalgia may result from treatment with a fluoroquinolone.
A half-dozen fluoroquinolones have been taken off the market because of unjustifiable risks of adverse effects. Those that remain are undeniably important drugs, when used appropriately. But doctors at the Centers for Disease Control and Prevention have expressed concern that too often fluoroquinolones are prescribed unnecessarily as a one size fits all remedy without considering their suitability for different patients.
Experts caution against giving these drugs to certain patients who face higher than average risks of bad reactions children under age 18, adults over 60, and pregnant and nursing women unless there is no effective alternative. The risk of adverse effects is also higher among people with liver disease and those taking corticosteroids or nonsteroidal anti-inflammatory drugs.
When an antibiotic is prescribed, it is wise to ask what the drug is and whether it is necessary, what side effects to be alert for, whether there are effective alternatives, when to expect the diagnosed condition to resolve, and when to call if something unexpected happens or recovery seems delayed.
At the same time, when an antibiotic is appropriately prescribed, it is extremely important to take the full prescription as directed and not to stop treatment when the patient simply begins to feel better.
I voiced some objections to the use of one of these with my husband's surgery. Had I read this article I would have put up a fuss. Interestingly it did not clear the catheter acquired infection that Augmentin did. It also delayed his heart procedure.
Fortunately, like many who take these drugs, he has had no side effects. But I reminded him when prescribed that it was one of the drugs I could not take. The doctor's comment was, it's a good thing you are not taking it then. A very flippant comment for a very dangerous drug.
For us, taking any antibiotic without specific indications is unwarranted. Indications meaning serious infection with a KNOWN organism sensitive to the drug. That means gram stain and culture. A drug may be started in an emergency once blood, sputum, etc. have been taken. Once antibiotics are started cultures will often not grow even if the organism is not susceptible to that antibiotic. The time it takes to obtain specimens and the cost is certainly small in compared to treating complications.
Surgeons in particular are quick to give you the broadest spectrum drug available before not only cultures are taken, but before any infection is noted. That is why OR aquired infections are so dangerous (from drug resistant organisms) and it also gives the personnel a false sense of security regarding sterile precautions. Another reason why thymectomy should be done by those experienced with dealing with MG.
b.
I for one had increasingly myasthenic limbs and breathing problems after one whole year of antibiotics in my system for a recurring staph aureus infection. (I was prescribed all different types including Ciprofloxacin)
I also came across this a while ago (I was actually typing in the side effects of my sedatives):
http://www.unboundmedicine.com/medline/ebm/record/21879778/abstract/Fluoroquinolone_associated_myasthenia_gravis_exacerbation:_evaluation_of_postmarketing_reports_from_the_US_FDA_adverse_event_reporting_system_and_a_literature_review_
Thanks for sharing your interesting article.
Calmday
I am putting this discussion in the links group separately from list of contraindicated drugs because it emphasizes the casual prescribing and acceptance of antibiotics and the danger.
b.
Can you please explain what you mean by your post? I am new to the concept of medication (best case scenario of course - to treat myasthenic weakness whereas others unfortunately exacerbate/uncover it)
Thanks
Clamday
Like the immune suppresants we take for MG, chemo also lowers the immune system so we are more susceptible to infections and thus are more likely to be taking antibiotics. I just finished another round of an anti-funcal fluconazole, for mouth problems. Yes, all our meds are potentially out to get us, but we have to muddle through trying to avoid the worst side effects while working on the underlying problem of an immune system producing undesirable antibodies.
In the Links group are the links to articles and discussions we find particularly helpful (otherwise they slide off the front page into relative obscurity. One of the "discussions" on the first page (there are two pages once you click "view all") is myasthenia and medications. There are links there to drug interactions,the medications to avoid part of the Manual for Health Professionals, other lists of meds to avoid, stuff about Mestinon (we probably should separate the good, bad, and the ugly).
There is enough material on those two pages to keep you up nights.
I am glad you brought this up. We have new members coming on and there is no way to put a notice that you should look there, so I think I will add a discussion to the links group about the links group and just post It to the main page once a month.
As you can tell, we are still refining this reference page. Anyone can post a link they find particularly helpfu. There is even a discussion about posting a link. A good place for people new to the diagnosis is the overview of MG that has slid to the bottom of the second page. If you have any problems, let me , Bruce, or Jen know. b.
Just the name alone is scary enough. A little Fluorine/Quinine combo for anyone? Moreso for people with MG at all! Yikes!
In addition to everything you just posted, more on the adverse effects here with links citing the references of course from Wikipedia:
http://en.wikipedia.org/wiki/Adverse_effects_of_fluoroquinolones
Be careful out there folks!
Love,
TJ
I had a sinus infection and after taking the first dose, while waiting for a piece of toast to pop out of the toaster, I started sneezing and itching. Within two minutes my eyes were swelling and I could barely speak. Next I could barely breathe. My husband called 911 and within 5 minutes my life was being saved by some very VERY much appreciated paramedics in my living room. Epinephrine, a short stay in the hospital and a couple of weeks of prednisone and I was better.
I went to the fire station one week after the reaction to thank the firemen and paramedics for allowing me to enjoy that Mother's Day.
Needless to say, I recognize all quinolones and carry a list of all the names just in case. It's listed along with my other drug allergies on my med alert bracelet.
Terrifying. I thank tequin for producing in me a healthy respect for and resistance to taking antibiotics or any other medication unless I am fully convinced it is necessary.
Thank you for the post Joe. We can't be too careful.
Cathi
Fluoroquinolones carry a black box warning mandated by the Food and Drug Administration that tells doctors of the link to tendinitis and tendon rupture and, more recently, about the drugs ability to block neuromuscular activity. But consumers dont see these highlighted alerts, and patients are rarely informed of the risks by prescribing doctors. Mr. Balch said he was never told about the black-box warnings.
Taking ciprofloxacin may worsen muscle weakness in people with myasthenia gravis (a disorder of the nervous system that causes muscle weakness) and cause severe difficulty breathing or death. Tell your doctor if you have myasthenia gravis. Your doctor may tell you not to take ciprofloxacin. If you have myasthenia gravis and your doctor tells you that you should take ciprofloxacin, call your doctor immediately if you experience muscle weakness or difficulty breathing during your treatment.
b.
Incidentally, when I took Ciprofloxacin I also had M.E as well as myasthenic weakness. So it wasnt until 3 years later, after the fact, that the pattern of myasthenic symptoms even became recognizable. I do admit the symptoms all seemed like it was just the persistent infection getting out of hand. At that time I never put it down to the antibiotics, didnt even know what fatigable weakness was but then again neither did my doctor who I thought new more about his job than I did. Now I know a lot more about MG, dont have M.E. and can see clearly the devastating the correlation between antibiotics/sedatives and the myasthenic tornado that swept through and almost ravaged my life.
Calmday
Also tendon problems, recurring trigger fingers even after operations.
And so forth!
Have a great day
Calmday
Thank you, All!
What awful - and unnecessary -
- complications and experiences, for all concerned.
Life-threatening.
Cathi - gotta love those first responders!
- Ross