The People's Perspective on Medicine

Have You Ever Been Warned About Irreversible Drug Side Effects?

When treatments cause irreversible drug side effects, the permanent damage to the patient's quality of life may be incalculable.

When you get a new prescription, your doctor might mention a few potential adverse reactions–things like headache, dry mouth, diarrhea or constipation. Such symptoms may seem bearable, especially if they go away once the medicine is stopped. After all, most people recognize that every medication has the potential to cause some problems. But neither physicians nor pharmacists are likely to mention one nasty little secret. Some complications are permanent. Telling patients about irreversible drug side effects might discourage them from taking the medication at all. However, not warning people about the possibility of persistent reactions can be devastating.

Weird Mouth Movements:

Problems with permanent drug side effects came to light with some of the early antipsychotic drugs. Medications for schizophrenia like chlorpromazine (Thorazine), haloperidol (Haldol) and thioridazine (Mellaril) were prescribed widely during the mid 20th century. Unfortunately, many patients taking these antipsychotics eventually developed involuntary repetitive movements such as sticking out the tongue or chewing.

Tardive Dyskinesia (TD):

Tardive dyskinesia (the medical term for this reaction) can have a devastating impact on quality of life. When an individual starts smacking his lips, grimacing, twisting his neck or sticking out his tongue, it looks very strange and attracts attention. Some patients develop involuntary jerky or writhing movements. People stare.

Stopping the medicine does not get rid of these debilitating movements (Health Technology Assessment, Aug. 2017). It may even make them worse.

One reader wrote:

“I was diagnosed with bipolar disorder and was immediately put on Abilify [aripiprazole]. In the last two years I have developed tardive dyskinesia [TD]. The doctor who made the diagnosis didn’t seem concerned about it at all. She just told me it was irreversible. I was never told about the risk of TD.

“I feel like I’ve been betrayed by a doctor who was supposed to make me feel better. Right now, I have twitches in my hands and legs, grimacing and pursing of my mouth and severe jaw clenching in addition to the tongue rolling in my mouth. I don’t know what to do.”

Melissa has been on thioridazine, risperidone, and aripiprazole at one time or another.

She described her tardive dyskinesia this way:

“I have bite sores in my mouth because my jaw hurts so much. I can hardly be around people without feeling like I am jumping out of my skin. It’s ruining my relationships.”

Julie was on antipsychotic medications and developed TD. She was one of the lucky ones:

“I will be 55 in a couple of months and developed tardive dyskinesia a few years ago. It is a permanent condition but I am exceptional because I was able to rid myself of it by stopping the drugs. This is not the norm.

“TD is usually permanent and often progressive. It is a disabling condition. I have seen very bad cases, where patients were unable to sit in a chair, or converse with others, or eat in public without causing a scene, never mind sitting at a computer and operating a keyboard.

“TD will affect you socially. Imagine trying to appear ‘normal’ at a party when you can’t stop your lips from smacking, or your tongue from jabbing out of your mouth, or your arms from jerking this way and that.”

Laurie was surprised by irreversible drug side effects of Abilify:

“I was on Abilify for years. When I finally went off it, I got tardive dyskinesia. I never knew you could get side effects from a drug you go off. Now I can’t work and am piling up doctor bills.”

Other Meds That Can Cause Irreversible Drug Side Effects:

Although antipsychotic medications are especially notorious for causing long-lasting or permanent complications, they are by no means the only agents that may create problems. Other medicines may also trigger irreversible drug side effects that last even after the agent is discontinued.

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Antibiotics and Long-Lasting Adverse Reactions:

For example, fluoroquinolone antibiotics such as ciprofloxacin (Cipro) and levofloxacin (Levaquin) can affect the nervous system as well as the tendons. These drugs can even impact blood vessels.

Here is an example from one reader:

“I was a healthy, active 53-year-old woman when I took Levaquin for bronchitis. It destroyed my body.

“Within three days of completing the prescription, I tore the cartilage in my knees. This caused immediate unbearable pain and severe nerve damage in both legs. Over the next few weeks I experienced a continued onslaught of horrible side effects: severe sensitivity to light, thyroid problems, nerve damage in my head that makes it feel like it is exploding in pain and severe gastric problems, prompting radical dietary changes. These are still with me years later.”

Cathi also had irreversible drug side effects:

“I took Cipro in 2003 and have needed 8 joint surgeries since. This antibiotic did permanent damage to my tendons, ligaments, muscles and joints – just two of the many FDA black box and strong warnings these antibiotics carry. Nobody expects an antibiotic to do this and cause aortic aneurysm.

“People don’t link their torn tendon, nerve damage or heart problems to the antibiotic they took days, weeks or months earlier. Read all of the warnings, please, before taking a fluoroquinoline antibiotic. Evaluate if the risk is worth it and if not, demand a different antibiotic because these antibiotics can ruin your life.”

An anonymous reader shared her anguish about her daughter’s irreversible drug side effects with ciprofloxacin:

“My daughter, who was happily married with three beautiful daughters, was a victim of Cipro. She was a happy, well adjusted woman in the prime of her life. She was never depressed, never took drugs and had no history of mental health disorders of any kind.

“Her doctor prescribed Cipro and she took it as ordered for 5 days secondary to what she thought was a UTI. Immediately she suffered numerous side effects. She was unable to sleep for four months. In addition, she had paresthesias [numbness and tingling in hands and feet], extremely toxic neurological effects, severe depression and anxiety and akathisia [restlessness and irritability].

“Because of the profound anguish she experienced, she required 24/7 watchful care. As she explained, something incessantly told her to kill herself. Her physicians did not believe that Cipro caused these symptoms. She lost her independence, which was devastating to her.

“On Christmas 2015, she was on her way to my home, approximately a 10 minute drive from her home. She drove onto the interstate, stopped her car and walked into the path of a semi truck and died!

“Since then, her doctors said they have finally read their FDA notifications stating this drug SHOULD NOT BE ADMINISTERED UNLESS THERE IS NOTHING ELSE AVAILABLE BECAUSE THE SEVERE SIDE EFFECTS FAR OUTWEIGH THE BENEFITS OF TREATMENT. It pains me terribly because nobody will be held accountable for the torture that she suffered.”

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Amiodarone and Lung Disease:

Doctors have become quite enamored with a drug for irregular heart rhythms. Despite very narrow prescribing guidelines from the FDA, this drug has been prescribed off-label for Afib. The agency states: 

“Even in patients at high risk of arrhythmic death, in whom the toxicity of amiodarone is an acceptable risk, amiodarone poses major management problems that could be life-threatening in a population at risk of sudden death, so that every effort should be made to utilize alternative agents first.

“The difficulty of using amiodarone effectively and safely itself poses a significant risk to patients. Patients with the indicated arrhythmias must be hospitalized while the loading dose of amiodarone is given, and a response generally requires at least one week, usually two or more.”

Some serious adverse reaction to amiodarone include:

  • Thyroid problems
  • Involuntary movements, muscle damage
  • Visual Disturbances, loss of vision
  • Lung damage (pulmonary fibrosis)
  • Liver disorders, blood disorders
  • Worsening of heart arrhythmias
  • Nerve damage

Reports from Readers:

Daryl is now almost an invalid:

“I am another victim of the drug amiodarone. My doctor put me on the drug without counsel a little over a year ago. I was NOT a ‘last ditch’ effort patient. I could wash my cars, walk around the block with my wife etc.

“Two months later, I found myself getting out of breath and it has progressed to now to the point where I cannot do anything without getting out of breath. It’s a terrible feeling.

“I only retired a year and a half ago. Retirement plans are gone. I do not understand why the FDA leaves this drug on the market.”

Gwen writes:

“I am currently dealing with severe lung issues due to the drug amiodarone. I am on oxygen 24/7 and my life has been seriously altered! I was never notified of potential dangers or ever tested to ensure that I was being treated based on the protocols. This is a very dangerous drug!

Can Sexual Complications Become Irreversible Drug Side Effects?

Unrecognized reactions to popular antidepressants known as SSRIs and SNRIs are related to sex. Psychiatrist Dr. David Healy has petitioned the FDA to warn patients about the possibility of lasting problems with drugs such as citalopram, duloxetine, fluoxetine and sertraline (International Journal of Risk & Safety in Medicine, June 4, 2018). 

According to Dr. Healy, some people experience difficulties with erectile dysfunction, loss of libido, genital anesthesia and “decreased capacity to experience sexual pleasure.” These may persist long after the medication is discontinued.

Sara shared this story about citalopram:

“I took a low dosage of citalopram for 8 months when I was in my mid 20s. Now I am in my mid 30s and am still having difficulty achieving orgasms and feeling sexual. Sexual health is part of being a healthy adult. Healthy adults get twinges of sexual arousal type feelings. I don’t. However, I do remember what it was like to feel sexual and I can enjoy it from my partner’s point of view.

“I have a great relationship with a man who is kind and loving. He thinks of me and my needs as much as I consider him and his needs. Having the right relationship has made the biggest difference, but nothing has fully corrected what the SSRI changed. Those drugs are very serious in my opinion, and should not be handed out as freely as they are, and certainly not to young people.”

Irreversible Drug Side Effects Should Be Studied!

These examples are merely the tip of a much larger iceberg. Other medications may also have insidious persistent adverse effects. Unfortunately, scientists have not studied this topic adequately. Drug companies are not motivated to conduct large-scale, long-term trials to determine whether a medication can cause irreversible drug side effects.

What should health professionals do? Be honest. Doctors, nurses and pharmacists should tell the truth about long-term or persistent complications. Patients should always be warned about this possibility before beginning such drugs.

Please share your own story or thoughts on this topic in the comment section.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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Effexor XR almost killed me when, with doctor approval, I cut the lowest dose (75mg) in half. Within 2 months, I went into extended seizures, randomly, head zaps every 2-3 seconds, uncontrollable sleeping (36 out of 48 hrs), raging diarrhea, extremely swollen eye area, and many more. This drug should be taken off the market. It was misrepresented from the beginning as an antidepressant that could be taken while pregnant. Babies born to these mothers were born in withdrawal!

When I questioned 8 different doctors and the company, I was given NO help. My body is permanently damaged from this pill. The makers, Pfizer, should be fined, but there’s no way to get my life back.

About 10 years ago I was prescribed ciprofloxacin (Cipro) for a suspected UTI but was never warned of the side effects to tendons. [I learned of the side effects on line through someone else’s severe experience.] The tendons in the thumbs on both of my hands were affected to the point that I could not pick up pans for cooking, use a can opener, twist a lid to open jars or pick up any object requiring the use of grasping with the thumb. I was amazed at how much I could not do with my hands because of my weak thumbs and sharp pain that would result. I took extended therapy but tendons were so weak I kept relapsing if I did any little thing using the thumbs. Although the right thumb is permanently out of joint [I am right handed] and both thumbs remains weak, I am now without the constant pain I once had, only to the goodness of God through prayer.

Duloxetine kills sex drive and can make the clitoris shrink.

most people have no idea the kind of damage NSAIDS can do, not the just prescription ones like Indocin, which can kill a patient in a few days and a few doses (clots/cardiac arrest) but also OTC varieties if taken chronically or in doses that are relatively high. Gut bleeding and kidney damage are very common, and liver damage may also occur.

People who need chronic pain control should not be on NSAIDs. Gout patients tend to be of a certain age , for example, but can be killed by the cure. Careful dosing and explanation of adverse event risks need to be part of every prescribing decision.

Polly Drugged, With EVERY MED. Now after 23 Years, FREE, “I AM NOT”. Lots of terrible issues, feels like Living in a Constant Torture Chamber. Weakness, Neurological & Nausea, to name a few. YUCK!

In 2009 I was trialled on Crestor. Within 24 hrs I started experiencing muscle aches. By day 5, I could not climb a flight of stairs without becoming short of breath. The first side effect on the office sample that I was given, was pulmonary fibrosis, and it was a permanent side effect. I stopped taking the medication immediately and notified my GP. She was furious that I stopped the medication. What I find disturbing, is that this side effect is no longer listed and hasn’t been for years. Every time I read an obituary that said the person died of pulmonary fibrosis, I wonder if they took Crestor.

Pamela,

You caught us totally by surprise with your report of pulmonary fibrosis and Crestor. This is not a side effect of statins that we were familiar with. Upon checking the official prescribing information we discovered under the category “Postmarketing Experience” the adverse reaction: “interstitial lung disease.” That means scarring or fibrosis of the lungs. I do not think this side effect is recognized by most clinicians. It is presumed to be quite rare. We could find no studies that have delved into this potential complication.

I was never warned all three times I was prescribed a Fluoroquinolone antibiotic (Cipro; Levaquin) by either the doctor nor the pharmacist. I experienced absolutely devastating side effects that have radically changed my life possibly forever.

Six years later I am still fighting the battle every minute of every day. Longing to be pain free and have my athletic abilities and bank account back.

These drugs are last-resort-only usage and still I would never ever take one again. The lack of knowledge on these permanent side effects is immense.
see Fluoroquinolone Toxicity support group on Facebook (10,000 members)

Thank you for this very important information.

Doxycycline Hyclate should be outlawed from the market. The possible side effects say the permanent loss of eye sight. Why would anyone take this????

I did try one tablet and it burned my throat for 2 hours trying to get it down. Terrible experience. Worst ever.

Tell me what I can do to get it taken off the market!!

After suffering from severe muscle pain with Pravastatin my doctor switched me to Zetia. Within three days I could not get out of bed or get dressed without help. The pain and stiffness were excruciating. I was told I had developed Polymyalgia Rheumatica. It is an auto-immune disease that is “triggered by something in the environment”.

The timing of the onset of this “disease” seems strangely coincidental. Just a quick Google search brings back many legitimate articles on Statin-induced polymyalgia.

I’m 81 and have taken baby (81mg) aspirin for about 4 years (a blood thinner) and Metoprolol (less than $10/90 days) for about the same time to control my blood pressure, which is does. I hardly have any side effects that I know of.
My doctor recently said I should look into switching from aspirin to Eliquis (2 times per day) or Xarelto (one time per day). Besides the cost of aspirin being almost non-existent and the new drugs I should “look into” is that both are the same price at more than $1200 for 90 days. (Of course a Part D insurance company can help.)

It is said that they work great. I also read that the drug maker and distributor of Xarelto have both settled a class action lawsuit for 25,000 people for $775 million because many people died from bleeding of the brain and other parts of their body. (They sold more than 8 times that amount so they don’t care.) Now lawyers are going after Eliquis. I think they forgot one thing: how do you stop the bleeding! The side effect seem to be DEATH! It got my attention!

I decided to stay with the aspirin.

I was prescribed gabapentin one year ago for migraines. Now I can’t stand still without moving my feet. People have asked me if I am dancing.

I was always told that my heart was healthy until, at the age of 78, following a cancerous upper left lung lobectomy, I was told in the ICU “If the morphine isn’t helping your pain, we’ll put you on ibuprofen.” At the same time I was diagnosed with post-op Afib. So I was immediately put on 2800 mg of ibuprofen AND 10 mg Eliquis. This continued on my discharge orders a week later, and I didn’t read what a disaster it was until another week, when I immediately stopped the ibuprofen.

Having never had a headache in my life. I had never had reason to learn the potential damage of NSAIDs, nor had I read the bottle warnings in hospital. Postop Afib went away, but I have been plagued with wild hypertension ever since and some horrible rare side effects from the different meds they’ve tried. Right or wrong I attribute it to the double dose of ibuprofen combined with the Eliquis. Cannot believe that the hospital pharmacy and discharge nurse signed off on this and that neither the surgeon nor the cardiologist caught it. Your opinion?

I think it is unusual to expect ibuprofen to control pain that morphine doesn’t control. The maximum daily dose is 3200 mg, so that would explain why the hospital pharmacy and discharge nurse didn’t think twice about it.

Am not aware of these particular effects of drugs, although I have heard of others. It is terrifying.

12 years ago I was given IV Levaquin as a prophylactic during minor surgery. I was not warned about the delayed adverse reactions or that they can be permanent. The doctor could have chosen a much safer drug. The Fluoroquinolones are insidious. I have not recovered!

My wife was put on a low dosage of prednisone for an intestinal issue. This was for long term and as a result her immune system was compromised and she contracted a bad case of shingles. She is going on her 10th year of nerve pain issues due to this. Several other doctors said she should have never been put through this regiment for such a long period of time. The list of tried cures, hospitals, doctors, is pages long and with no cure in sight. Bottom line is to do research on any drug being prescribed to you.

In December 2017, while recovering, in a nursing home, from knee surgery, I was given many drugs. It took me four months to ease away from all drugs and another three months to have them blow out of my system. I worked with a cardiologist. As a result, I refuse to take any drug! I immediately experience the side effects listed on the prescription explanation.

Recently, when If had cataract surgery, I was given a “little drug” – just to put me under. Afterward, I was delirious for half a day and had weakness in my entire for 24 hours!

My body does not do well with any drugs. I refuse to take them.

I took Wellbutrin for several years an developed irreversible tinnitus. I also took Nexium for several years and developed osteopenia. Why are people not warned about these possible side effects ?

I am 85. I was in good health, but kept getting urinary tract infections. I was given Cipro on several occasions I now have an aortic aneurysm and nerve damage in my legs and feet

OMG! This is terrible. The article was interesting to read. Here is another drug that my dr. told me about. I have been on Symbicort for quite a long time. It helps with my Asthma. I use this twice a day. Once in the morning when I get up and once in the evening. Last month when I went in to get my meds re-filled, my dr mentioned that since I’m now getting up in age there is a very good chance that I’ll have reactions now to this drug. Cotton mouth is one, also racing heart. If it does happen then off to the dr office. All I can say is this: Sure is fun getting old now!

I was put on amiodarone several years ago after heart surgery. My recovery was normal in the hospital and I was walking the halls with no difficulty before discharge from the hospital. But at home, my condition steadily worsened until I could hardly walk across the room. My daughter insisted on taking me to her doctor and he warned me about the side effects of amiodarone. I stopped taking it and in a few days resumed normal recovery. I shudder to think what would have happened if I had kept on taking it. I agree, this drug should have been taken off the market. long ago. Where is the FDA when we really need it, for heavens sake? Are they blind, deaf and dumb? Or just bought and paid for by Big Pharma?

Not only was I never warned about the side effects of the Fluoroquinolone antibiotics, Cipro, Levaquin etc, the doctors STILL continue to give them out like candy. Many either never heard of the adverse reactions or refuse to believe it is NOT a rare occurrence. They also have NO idea that Cipro and Levaquin are in the same family as I have heard horror stories of people who tell their doctors that they can’t take Cipro so the doctor then prescribes Levaquin!

I have been very sick since the 90s from every form of Fluoroquinolone antibiotics including the ear solution that doctors and the FDA refuses to admit they harm as much as the pills and IV forms do. My dad died in 2011 from Levaquin when his aortic aneurysm ruptured, another side effect of taking Fluoroquinolones.

Thank you for writing this article and thank you to those of you have have shared your experiences. I cannot thank you enough!!

My father, a retired basketball coach and P.E. instructor, has been active throughout his working life and well into his retirement. Not long agao, he was prescribed Amiodarone HCL and now he can barely walk more than a few steps without becoming winded. My conversations with him are very brief due to his shortness of breath. He has seen more than one pulmonologist within the past year to no avail. Doctors never mentioned that Amiodarone has this effect on people. I cannot thank the Graedens enough for sharing this information with the public. I have only one question… Is there a special protocol for discontinuing this drug? My dad also has Afib, asthma and kidney issues. I realize that some drugs cannot be stopped cold-turkey (such as beta blockers) and I’m wondering if this is one of them. Again, many thanks for this enlightenment!

I was put on Cymbalta for fibromyalgia pain. None of my Drs told me about the long term side effects nor how difficult it is to discontinue this drug.
The drug is designed for short term use but Drs put patients on it for years.

Long term damage has included liver enzyme problems, mental confusion, heat sensitivity, sleeping problems, an emotional numbness, and even increased tooth decay. Why wasn’t I informed prior to prescribing? And Drs certainly didn’t mention the black box warning regarding difficulty in discontinuing!!

The drug is only made by Lilly in 30 mg, 60g and 120 mg capsules. That means discontinuing at a slow rate is impossible. Having a compounding pharmacy making lower dosages is expensive and not covered by insurance, which few people can afford.

I point the finger at Lilly for putting profits above patients health and well-being and for poor education of physicians.

I so appreciate articles like this one that alert unsuspecting patients to side effects that are permanent or that severely impact one’s quality of life. Since learning a few years ago about the dangers of Cipro and such, I’ve avoided taking that drug and done my best, by lifestyle choices to stay healthy. Thanks for informing the public. It is a great service that you do!

At the age of 28 I was prescribed Haldol for what was deemed to be a manifestation of schizophrenia but which was probably lead poisoning. I was painting bridging with lead-based primer with no protection. I complained of fatigue, insomnia, diminished libido, no appetite, depression, and a felt compulsion sometimes to drive my car into a bridge abutment.

I was put in a psych ward and given Haldol. Very quickly I developed extreme akathisia. Akathisia is not mere restlessness. The restlessness is a response to neuro-muscular torment which never stops. It was caused by the Haldol but I didn’t know that. When finally another psychiatrist recognized the error, he took me off Haldol. The akathisia went away but one result remained, namely diminished genital sensation. I could still function but orgasms became difficult to achieve. Good for her, not so great for me.

Nobody wants to hear about these effects, especially when they come with a psychiatric diagnosis. And nobody, nobody, will believe such a diagnosis could ever have been made in error. Man, you learn to keep that out of the conversation, any conversation: Yeah, I was diagnosed schizophrenic, but that was a mistake. Oh, sorry you have to go. Was it something I said?

20 years ago I had a severe pneumonia – it was in all 5 lobes and in addition caused emphysema. It was diagnosed as a “super bug” but the doctors gave me IV Vacomycin for 60 days. I survived. But….I suffered chemical-induced tinnitus and some hearing loss – irreversible and untreatable with hearing aids. In addition, the veins in my arms from the brachial arteries to my finger tips bruise at the slightest injury, and no IV can go into any veins in either arm. I am grateful to be alive, but still….

I am one of Dr. Healy’s correspondents. The widespread loss of sexual sensitivity and response is far under-rated. I was not warned of this potential and when I raised the issue after a month or two, the practitioner laughed it off, and continued the drug for three years.

It’s now twenty-five years later and sensitivity and response have not returned.

Two years ago next month (Aug. 2017) I experienced a swollen tongue 1 hour after taking fluconazole. The ER gave me IV cortisone, then a Medrol pack later. Neither altered the swelling, which exists today. Medical professionals don’t consider it a “condition”. I assure you that the patient does: ruffled on one edge from being bitter, cracks all over with taste buds showing, and chronic irritation.

Important information for us to consider as patients. Especially should be considered seriously by all in health care profession. Where is the “ first do no harm” thought?
It’s one of the issues that fits “the cure is worse than the disease” comment.
Thank you Gradons for passing on vital information.

Drugs cannot do everything. The process by which they are cleared for pubic use is flawed.

I have Tardive Dyskinesia after taking Reglan for a day and a half (5 pills) after minor complications from gallbladder surgery. I knew it was a black label FDA drug but my doctor prescribed it for only 1 week. The FDA warning says not to take it longer than 2 weeks because it can cause TD.

I was hospitalized with a severe TD reaction. According to a neurologist I’m 90% recovered but I have flares frequently. I’m told it could be permanent or it could go away I just have to wait and see. It’s been 3 months since exposure. Side note; I did some research and found that I’m genetically predisposed to be sensitive to medications that have TD as a possible side effect.

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