Comments From Doctors About Fluoroquinolone Toxicity

Comments

With every article about fluoroquinolone toxicity that is published (there are hundreds HERE), more and more people come forward and say, “that happened to me too,” or, “those drugs hurt my family member,” or some variation/elaboration of those sentiments. As awareness grows, more and more doctors are coming forward to say that fluoroquinolones are dangerous drugs whose risks are under-recognized. Growing awareness and recognition, especially from doctors, nurses, and other medical professionals, is important in the fight to reduce the number of lives ruined by these dangerous drugs.

It recently came to my attention that there were many good comments from doctors and other medical professionals on an article in Medscape Medical News, “FDA Panel Says Fluoroquinolones Need Stronger Warnings.” (If the link leads you to a sign-in form instead of the article, just google “FDA Panel Says Fluoroquinolones Need Stronger Warnings” to skip the sign-in-wall.) It should be noted that Medscape Medical News is aimed at medical professionals, and that one needs to work in medicine in order to comment on stories on the site. The comments are, for the most part, a conversation between doctors. It is heartening to see that most of the comments are supportive of the notion that stronger warnings are needed on fluoroquinolones, and that the real risks of Cipro/ciprofloxacin, Levaquin/levofloxacin, Floxin/ofloxacin and Avelox/moxifloxacin are under-recognized and under-appreciated. Several of the commenting doctors also noted that these drugs should only be used as a last-resort, after all other options had been exhausted.

In this post, I’m going to highlight some of the comments that were published on “FDA Panel Says Fluoroquinolones Need Stronger Warnings.” It’s good for “floxies” to hear from doctors who recognize the pain caused by fluoroquinolones, who are also fighting for more prudent and appropriate use of these dangerous drugs. It’s nice to hear from doctors who recognize that fluoroquinolones can cause a multi-symptom chronic illness, and that fluoroquinolone toxicity is not a simple “side-effect.” A huge “THANK YOU” to all the doctors who left supportive comments on the article! Conversations between doctors about the dangers of fluoroquinolones are going to do a lot to change how fluoroquinolones are thought of and prescribed.

Here are just a few of the comments (I ended up copying/pasting most of them, but there are still some gems left behind in the comments section of the article):

“At the age of 39, I suffered horribly from the use of Cipro. It changed my ability to practice Anesthesiology. I had to go to barely part time work when this occurred and could barely move. I had no preexisting health issues prior to the use of this fluoride containing poison in my opinion. I still have evidence of its destruction 6 years later. I have met several other individuals who have also suffered among them a classical pianist, two other physicians and several other highly educated individuals whose lives were changed monumentally especially for the first one to two years post “poisoning” as I call it.

The toxicity of this class of drugs is predominantly musculoskeletal and neurologic and I can truly sympathesize with patients who have been “blown off”as hypochondriacs by their PCP s or others when they present with severe musculoskeletal pain and neuro and neuropsych issues. There are other SE as well in various organ systems however as noted most seems centered in the MS and neuro psych realm. Many have expansive work ups (as did I) to rule out ominous diagnoses all to no avail but suffer greatly nonetheless in terms of years not weeks or months!

Fluoroquinones are cytotoxic to chondrocytes and the vasa vasorum is also thought to be greatly affected at the microscopic level and may lead to the neuropathy. Some feel this propensity in patients to suffer what is called (By victims of these drugs)”FQ syndrome”may point to a mitochondrial source.

Just because there is no blood test to measure the damage these poisons wreak on previously well patients or because the wide range of symptoms patients experience has yet to be acknowledged and named a formal syndrome, doesn’t mean the horrible side effects aren’t real or don’t exist. To do so, is folly. I was finally diagnosed at a well known academic center by a neurologist in conjunction with rheumatologist. Also of interest is the flood of multiple significant musculoskeletal and neurologic complaints suffered by a large proportion of government workers who were given Cipro after the Anthrax scare several years ago. However, again, many people were dismissed then.

One thing is certain is that significant side effects of these medications exists and failure to acknowledge patients who present with what seems to be a “positive review of systems” after FQ use should be taken seriously. Especially true when as a physician you know your patient was previously healthy prior to FQ use and not a patient who routinely presents with multiple mundane complaints.

I feel and have read many patients who experienced nearly identical symptoms to the ones I suffered. Most all blown off as head cases. If more physicians would entertain the possibility a FQ may be responsible for their patients suffering, maybe then they would

Report to the FDA and we would have a true idea as to the incidence of life changing and sometimes permanent havoc these drugs wreak on our patients. In my case, I’ve lived it and I welcome the added safety warnings on these drugs. People have abused these drugs which are extremely broad spectrum and powerful for conditions that don’t require a hammer to kill an ant. Hoping these warnings will ease the indiscriminate use of these very potentially damaging drugs.”

“This does not even mention the risk of acute toxic psychosis. I have witnessed it in a 17 year-old on levofloxacin for h. pylori. Dramatic, acute onset of psychosis after two doses with no prodromal history. There are more cases out there I understand. I have learned to reserve these drugs for cultured bacteria for which there is no other reasonable alternative. It is not a reasonable choice for prophylaxis or starting treatment pending culture results in my opinion.”

“I, myself, have had major issues with this class of drugs.  Took Avelox in July 2013 for an upper respiratory infection without issue.  Was given Avelox again in November of 2013 and within 10 minutes of my first pill, I was in anaphylactic shock.  I was transported to the ER and nearly died!  Over previous years, I was given Levaquin and Cipro for other URI s.  Guess my body had enough.  My joints are shot and I will never be the same again.”

“I agree with need for stronger language even a black box warning and better education of prescribers.”

“I am a nurse, and i never knew about this until i took Levoquin and Cipro. Now i am a disabled person. I lost my life. The side effects are not being reported. Check the study UCSD (University of California, San Diego) is doing. Thanks for reading our notes and joining in.”

fluoroquinolone-lawsuit-banner-trulaw

“I am a BSN, RNC-NIC nurse.  I had been given Levoquin and Cipro both at different times.  I am now a “FQAD” person otherwise know as a “Floxie”.

The medication was given appropriately both times as second and third choice for sinusitis and possible bacteria meningitis (it ended up being viral).  I am prone to meningitis and needed to be treated. After two other abx didn’t work, i had to go on a Fluoroquinolone.  My life was saved.  However, it is also ruined.  I was walking up a short flight of stairs, slowly, nothing special, and my Gluteus minimums and my Gluteus medius tore almost completely off my femur.  I was allowed to do nothing and no physical therapy allowed for 7 months.  pain, when not on analgesics was 10/10.  ON FIRE!!  Finally off to the Physical Terrorist and she seemed to somehow cure me.  It is coming back through.

I have concentration difficulties, issues with eyes, i fall asleep sitting up at the dinner table, i cannot remember words, faces, people i know well, EEG shows something as does MRI and have to go through Neurophsych testing, pain head to toe, dx with Fibromyalgia too.  I have never, ever in my life been depressed (unless called for in the case of a loved one dying etc).  I now have depression and am slightly suicidal.  (NEVER EVER that way previously, this is from the Fluoroquinolone.)  I have a chronic fatigue type of issue. I could go on – so many problems.  I have to go have my heart checked now i have issues there  – not sure what.

Please, do a culture.  Insist on a culture.  There may be another drug. I lived, but my life is ruined.  I loved being a nurse.  I cannot even garden now and had to hire a housekeeper.

This is serious!  These Fluoroquinolones are poison.  I don’t really do anything anymore.  i am afraid of running into people who know me and i should know but do not.  That is embarrassing.  I have taken to telling them i am sorry, i have fluoroquinolone toxicity and it has affected my brain.  Will you tell me how i know  you?  Embarrassing as hell, but so far so good, everyone has been nice about it.  When i run into someone who is not, i will probably end up back in my house.

In retrospect, i would rather have risked not taking it and not living.  Yes, it is that bad.

Do not poison your patients.  Tell the docs, they do not know.  Look us up on Facebook by typing in “Fluoroquinolone” in the search bar.  Meet us and see what our lives are like.   One Cipro tablet, one Levoquin can cause this.”

“had reaction to fluoroquinolone but question how many reactions are actually reported to FDA. I know mine wasn’t. Suspect rate of side effects is way higher than reported. also suspect the generic I had releases at a different rate of delivery than the older brand name Levaquin possibly causing reaction as I never had it with brand name in past.”

“After one dose of ciprofloxacin, I developed Achilles tendinitis, first on the right, later on the left. These impaired my mobility for more than one year.”

“Quite a few postal workers presented with today those of us in the “know” call FQ syndrome after prophylaxis for anthrax scare!

There’s a lot out there! Physicians have failed these patients by and large by not reporting these side effects and hence nothing has been done with veracity till now as more and more patients are getting vocal and advocating and demanding answers. The Internet has allowed many suffering to see they are not “crazy” and others are suffering too!”

“Excellent article ,discussing a very important subject.FLUOROQUINOLONES are terrible drugs ! no one can imagine how harmful are they till he suffers one side effect and i refer to the SENSORY NEUROPATHY involing the whole body from face to feet including chest and abdomen.”

“Fluoroquinolones ought to be the absolute last antibiotic of choice in every case. Its’ highly unfavorable safety profile would make me think long and hard before using it.”

“Some doctors still hand these things out like aspirin. I knew they were dangerous, but not this much. This announcement needs very effective publicity – especially to physicians and pharmacists.”

“don’t forget the neurotoxicity ( potential that is ) is not limited to the periphery and that patients with epilepsy should probably be spared the ”quinolone risk” unless options are limited and the treated condition dangerous.”

“FQ’s were brought on the scene with a lot of hype. IMO they have not lived up to the hype that preceded its use. Whatever happened to using Tetracycline for sinusitis, Bactrim for UTI’s. Of course you could go outside the box and use colloidal silver for any and all infections without worry of resistance.”

“I am amazed at how often the quinolones are prescribed when there are safer alternatives. They should not be a first choice!”

“I suffered horribly from Cipro and relate to the fact that MOST physicians have no idea of the wide swath of side effects these drugs are responsible for and unfortunately some of them are so severe they leave the victim with permanent sequelae. So many patients “blown off” by their physicians who either fail or refuse to acknowledge the poison these drugs are. It kills Anthrax.”

“I don’t know why any physician would risk prescribing fluoroquinolones. Tequin almost killed me and I’m not exaggerating. I spent several days close to death in the hospital. Thankfully I’m alive but my hearing and eyesight and blood vessels are permanently damaged and I STILL have other autoimmune, neuropathy and soft tissue issues as well ( since 2003). I spent several days in and out of a ‘ diabetic’ coma and the doctors were no help. No one would listen to me when I told them it was the Tequin that was killing me. Given my sed rate, I was given a Lupus diagnosis. That was the final straw for me and I knew I would die if I didn’t get out of there. When I was coherent long enough to speak to my husband, I told him to unplug me, give me some soda and crackers so that I could gain enough strength to walk out of the hospital. I went home proceeded to do my own research and find the help I needed from friends/colleagues. I was in so much pain all over my body and had to sleep on a hard floor ( with my dogs 😀 ) for two months because the bed was too soft and the slightest strenuous movement was too painful. It took a good year before I was completely pain-free and the tinnitus became tolerable. G-d help anyone in a similar situation that doesn’t have the same level of education to help themselves. These meds should be banned!!!!!!!!!!”

“With the possible exception of darifenacin (Enablex), anticholinergics (antimuscarinics) used in treatment of overactive bladder also increase the risk of QT prolongation and torsade de pointes. Perhaps we should show particular caution in prescribing fluoroquinolones for patients using longterm anticholinergic medications.”

“Maybe physicians should consider side effects more and potential for developing resistance. Cheaper first generation drugs can still be used effectively without going to the big guns for minor infections.Patients don’t always understand potential consequences. Physicians should.”

“It has been more than ten years ago now when the medical director of one of the hospitals I was on staff at told me that flourquinolones was appropriate first-line therapy for a UTI. I vehemently arqued with him to no avail. There was no changing his mind.

Tell me, did he sell out or was the drug manufacturer’s campaign so high powered to convince everyone, except me, that this was appropriate care?”

“Nice article. Warning may also include their effect on sleep, causing insomnia.”

“My father got severe drug reaction with ciprofloxacin in the form of bone marrow failure. I have also been reported cases of bone marrow suppression and skin rashes with ciprofloxacin. It needs further careful observation.”

 

 

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19 thoughts on “Comments From Doctors About Fluoroquinolone Toxicity

  1. L May 12, 2016 at 10:25 am Reply

    One of the major problems is the lack of communication between the FDA and the medical community (although of course their client is big pharma, so maybe this is intentional.) It’s great that SOME in the medical community are speaking out against the FLQs, but you would never know that here in southern California, in my area. They are still considered “the greatest!” thing since sliced bread.

  2. Mark A Girard May 12, 2016 at 11:05 am Reply

    Thanks Lisa for another great article! This is a great collection and a great idea as far as the concept of the article. We desperately need the medical community to become aware of how dangerous these drugs really are, Mark Girard, Fluoroquinolone Toxicity Group

  3. Myti May 12, 2016 at 11:18 am Reply

    The medical community should unite and speak up and share their adverse reactions with the world, with us victims, with FDA and with Pharma. What we need is a manifest signed by as much MD’s, RN’s, pharmacists and so on as possible. A page in the Washington post. Saying that fluoroquinolones are very dangerous to some. That we need research how to heal us. That we need research about who is vulnerable. Talking to each other on a medical website isn’t going to help us.

    • L May 12, 2016 at 12:32 pm Reply

      You are right of course, but there are roadblocks to this. First, most MDs are loathe to consider the have been poisoning people all this time …not to mention a certain arrogance among many. There have been hundreds of news articles, including in WSJ, NY Times, Forbes…hasn’t made any difference. there have been hundreds of videosin TV affiliates, bt major network news? Nope. Too much ad revenue. I have personally written probably close to 100 letters and emails to members of congress, govt agencies, news stations, 60 minutes …3 times, dateline, the world court, high power attorneys, celebrities, takk show hosts…you name it. sadly I think it may take a person in a position of poer who gets floxed him/herself. Don’t count on the FDA. They are riddled with big pharma and have known for decades. Even dr jay Cohen, who researched and wrote about it, and addresses the senate, got nowhere, and he expresses that frustration inhis book. Thus is why it is so important that Everyone on this site write letters, send emails, speak out, and not be complacent.

  4. L May 12, 2016 at 12:34 pm Reply

    Damn ipad, sorry about all the typos. Used to my PC.

  5. Aidan Walsh May 12, 2016 at 1:55 pm Reply

    I am furious

  6. bjacob131 May 12, 2016 at 2:43 pm Reply

    I read an article of a doctor that diagnosed skeletal fluorosis in a woman who drank several gallons of tea a day! Is this the same fluoride found in these drugs?

  7. Carolyn May 17, 2016 at 5:50 pm Reply

    Levaquin has altered my life. My health sucks now.
    Cataracts, Ranaulds, blue feet, small cell neropathy , allways have pins and needles ( feels like your hand fell asleep, ) Achilles tendon severed, new hip, arthritis throughout all joints, interstim, mesh, weak, bad stomach, I am losing some memories and Brain fog, forget simple things, cant follow verbal comands, Chronic diaharria, Anxiety, constant chronic pain,
    I took 3 pills and couldn’t walk.
    That was 10 yrs ago. I just keep being positive and it helps. I am 48 and was allways healthy and active. Water and snow activities, hores and camping. I can’t do any of that now.

    • L May 17, 2016 at 6:29 pm Reply

      So sorry Carolyn. A number people here have been helped by colostrum. What helped my gut was gluten/gmo/dairy/soy free and organic. Very few processed foods. Probiotics and digestive enzymes. My gut has come a LONG way in a year of this. I too was told I now have early stage cataracts. I am trying eyedrops with carnosine that are supposed to help. I also had over 50 IV s that helped immensely with pain, peripheral neuropathy, breathing issues. I wish you continued improvement.

      • Cindy July 9, 2016 at 6:52 pm Reply

        Do they do gluthianone IVs in the UK?

  8. Chari June 5, 2016 at 1:40 am Reply

    My husband has been severely damaged by using Cipro. Were very expensive antibiotics. I cannot even begin to tell the horrific story, too complicated! Thank you for the article.

  9. Cindy July 9, 2016 at 6:55 pm Reply

    Put the b…….. who prescribed them in prison. Then start on Big Harma.

  10. Stacie Rafter February 22, 2017 at 6:49 pm Reply

    My father-in-law died from taking Avelox. Toxic Epidermal Necrolysis. Horrible death.. he was transported to a burn unit and died there due to the loss of his epidermal layers.

    I was given a similar antibiotic and within a half hour I felt like a wave had hit me.. I laid down in bed and stayed there for 3 days thinking I had a flu but was being treated for an UTI.. I was delirious, had to hold on to the walls to steady myself. I then got what appeared to be razor burn on my legs and then I realized I was having an allergic reaction to the antibiotic prescribed for the UTI. It took days to finally feel better after stopping it. Now I suffer from pain all over. I kept thinking I had fibromyalgia but now I am not so sure.

    • L February 22, 2017 at 7:00 pm Reply

      OH I am so sorry for your father in law. Sounds horrific. And yes, many people get misdiagnosed as having fibromyalgia, chronic fatigue, and a host of other illnesses. Considering the hundreds of thousands (millions?) who have been injured it is mind boggling this is still the medical community’s best kept secret.

    • Lisa February 25, 2017 at 9:34 am Reply

      I am so, so, so sorry for everything that you, and your father in law, have gone through because of these drugs! I’m so sorry for your loss and for your father in law’s pain and death! There is nothing okay about any of this.

      A lot of people suffer from chronic pain after taking fluoroquinolones. Some people have been helped by the painkilling herb Kratom. It’s worth researching.

      There is a wonderful support group on facebook that may be able to offer some good pain-relief suggestions too – https://www.facebook.com/groups/floxies/.

  11. Jennifer Davis February 27, 2017 at 9:22 pm Reply

    I have gone to a holistic center here in Memphis once since my symptoms started and got a glutathione/Myer’s Cocktail IV. I need several more though….probably once a week at higher doses…..which is more than I can afford. The IV ranges from $150 to $200 each visit for therapeutic doses to treat fluoroquinolone toxicity.

    • L February 27, 2017 at 10:27 pm Reply

      I hear you Jennifer….I ended up getting more than sixty different kinds of IVs and had to stop because of the money, but they saved my life.Really turned things around for me.

  12. Sat July 15, 2017 at 10:01 am Reply

    HOW far in when you took these treatments? I’d like find holistic help as well. About at end of rope no more room to tie knots..ho.. Beside myself here. THANKS and best for all affected I’m.trying silence in suffering now as seems no one does get it…. Think we’re weird crazy ETC.feeling awful.. trying laugh some.. So out of help zone..( Literal).

    • L July 15, 2017 at 10:31 am Reply

      Sat, not sure if you were replying to me, but I started IV therapy about 2 1/2 months in. I would have started sooner, but having been brought up to only trust doctors, I was afraid. I actually had the phone number for the naturopath a good month before I finally called. At that point I was in such horrible shape, barely walking, gasping for breath, I didn’t care if it killed me! (a win/win 🙂 ) I started feeling small changes after about the 3rd or 4th IV. I was also doing some electro-magnetic stuff. The changes were gradual. took about a year to feel close to normal. IT is has now been 2 1/2 years and I still have some (perhaps permanent) side effects, but feel closer to normal than I ever thought I would.

      The best way to find someone is through a referral, of course. Short of that, I would do a search for integrative MD or ND. I was fortunate to have actually gotten mine through someone who posted on floxie hope. Also, if you find someone who specializes in Lyme Disease, that can be helpful as well, since we share a great deal in common with them, side-effect wise. (In fact, at my NDs, a good half were cancer patients and about half had Lyme. This particular ND had already treated a half dozen FLQ patients.)

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