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.
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.”
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.”
“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.