Lifestyle

Is Botox worth it? Kiwis tell of devastating side effects

In the quest for ‘perfection’ and youth, Botox is front and centre, providing a smooth filter with a pinprick. But, like all medicine, it is not entirely risk-free.Joanna Mathers talks with those who have suffered concerning and in some cases, devastating, side effects.

The potion of eternal youth is a lethal neurotoxin. Injected around the eyes and lips, it renders wrinkles impotent: smoothing the face in an expressionless, ageless, mask. The potion is ubiquitous, it’s inexpensive, and it’s (officially) harmless.

Botox, and its fellow brands, Dysport et al, are ringmasters in the 21st century circus of perfection. It’s a filter in a vial, pesky lines disappear as the neurotoxin renders muscles impotent. And it’s insanely popular – even given the influence of the Covid-19 pandemic (and a 43 per cent drop in revenue) Botox sales for the second quarter on 2020 sat at nearly US$230 million.

According to the mainstream messaging around Botox, it’s safe. Caci Clinic is one of New Zealand’s main providers of Botox treatments. In a statement, the clinic’s director Brandy Wehinger says: “Botox has a very high safety record in New Zealand, however with any medicine, in rare occasions, it can have unexpected side effects. Our Registered Nurses are highly trained in delivering the treatment but also well versed in the event of a reaction, or side effect. We provide comprehensive after-care and follow up, however, if any customers experience unexpected side-effects, we encourage them to talk to us, or another registered healthcare professional immediately.”

In New Zealand, Botox is approved for use through Medsafe. While no one was available for comment on Botox’s possible side effects, a data sheet from the organisation lists a range of possible reactions, including trouble breathing (which can be life-threatening), muscle weakness, trouble speaking, constipation, and aspiration pneumonia.

These symptoms occur as the toxin travels from the injection site to other parts of the body, a phenomenon that is acknowledged on the Medsafe sheet. The symptoms are also listed on the website of Allergan, the company that makes Botox.

Nevertheless, the potential dangers of cosmetic Botox don’t seem to be widely known (or accepted) by those who administer the treatment.

Investigating the websites of practitioners offering Botox, you’ll find this message time and time again. But here’s what’s also true.

Botox is a bacterium called Clostridium botulinum, the deadliest poison known to humankind. And, as you would expect from a lethal neurotoxin, in some rare occasions it can wreak havoc on the body.

Athens-based breast surgeon and pharmacologist Dr Eugenia Yiannakopoulou undertook research in 2015 around the long-term side effects of Botox (primarily medical interventions, which, admittedly, use higher doses) and discovered some facts that give pause for thought.

In the longest documented follow-up (12 years) of patients treated with botulism toxin, Yiannakopoulou’s research, published in online journal Pharmacology,revealed 16 patients from a sample size of 45 reported the following symptoms: dysphagia (difficulty swallowing), ptosis (drooping eyelids), neck weakness, nausea/vomiting, blurred vision, marked weakness, chewing difficulties, hoarseness, oedema (swelling), dysarthria (loss of tongue control), palpitations, and general weakness.

Another analysis, by Yiannakopoulou – this one of 303 patients in Germany who received at least six botulinum toxin injections within two years – revealed that 75 per cent of them experienced adverse effects.

Yiannakopoulou is extremely concerned about the lack of information given to people who are intending to have Botox treatment.

Yiannakopoulou said in her opinion: “If doctors are saying this medicine is almost completely safe, they are not telling the truth.”

She believes that the relatively small numbers reporting adverse effects is due to people’s reticence around admitting to the treatment. “People are embarrassed to report it, so there isn’t much data around.

“I’m a surgeon. I would feel more comfortable doing a conventional surgical intervention than injecting a patient with botulism toxin. You can never be sure where it would go and whether it will have adverse effects.”

Judy* is an intelligent, professional woman, who adheres to a healthy lifestyle. But she was convinced by the mainstream narrative around Botox being safe and effective and decided to have a one-off treatment for wrinkles on her face.

Attending an Auckland clinic last September, there was nothing in the consent form, or preamble prior to the treatment, that gave her reason to pause.

“There was no discussion prior to the treatment on the possible side effects, or the risk of toxin spread. Nor was there anything of concern on the consent form. Essentially there was no discussion on possible risks or side effects.”

She was given 30 units of Botox on her forehead, between and around her eyes. After the treatment, there was no discussion of post-treatment care, but she was told not to rub her face. Within 48 hours, her health would crumble.

At around 10pm the following day, symptoms started to appear. She was feeling a bit edgy, so she went to bed.

“Within half an hour, I started to experience a racing heart rate, feelings of dread, shaking, sweating, inability to fall asleep (I was awake the entire night). My body felt like it was on fire and I had electrical surges through my arms and legs, I had heavy legs, and I was feeling off-balance.”

The morning provided no relief. In fact, new symptoms began to arise. Severe brain fog, a tight feeling around her head, extremely dry eyes, heavy eyelids, headache and aching face.

Judy was so distressed by what was happening to her, that she emailed the clinic (feeling too incoherent to call).

The next day she visited the clinic, where she was told “you will be fine” after a basic neurological deficit test, and sent home with the advice “don’t be by yourself”.

“The clinic didn’t seem to know what to do with me, one minute they were sending me to the hospital, the next minute I was told I would be fine.”

It was recommended by the GP who saw her that she be followed up by one of the practitioners there, the one who had performed the Botox treatment. There was one follow-up text asking how she was feeling. When Judy reported no change, she says the clinic initiated no further action.

She submitted a report to the Centre for Adverse Report Monitoring (CARM) which records the adverse effects of drug treatments in New Zealand, documenting her symptoms. Four months on, Judy is still experiencing random bouts of dizziness, waves of anxiety, dry eyes, and a lump feeling in her throat.

What Judy was not aware of was that Botox carries a “black box warning”, the strictest labelling that the FDA in the United States, which approved the treatment, can mandate. The warning was added after hospitalisations and deaths of children who had been treated with Botox for muscle spasms, and after pressure from lawyers who had taken Allergan to court after clients suffered terrible side-effects.

This warning states that Botox can spread from the injection site and cause severe side-effects, which can be life-threatening.

“If I had been given that information, I would have never gone ahead with the procedure,” says Judy.

A spokesperson for the clinic has stated that they did everything they could to help Judy and explained the consent form has now been changed to reflect the possibility of severe side effects.

Finding anyone in the New Zealand medical profession with knowledge of the deleterious effects of Botox is nigh-on impossible. It exists in a shadow land between medicine and cosmetics; none of the experts contacted felt they were knowledgeable to answer questions around its use.

But for all its “safe” reputation, Botox has known casualties. CARM has a record of significant reactions to Botox, including death (after an incorrect dose was administered) and a stroke after a dose that would be consistent with cosmetic use.

There have also been nearly 50 claims to ACC relating to Botox, most of them in the past five years. However, a UK research paper from 2016 published in the online resource PubMed found only 6 per cent reported adverse reactions, so the total is bound to be much higher.

Texas-based lawyer Ray Chester, operating out of the music town of Austin, has seen first-hand the damage that Botox can cause. He was also one of the people who helped to get a black-box warning included in the Botox packaging.

He has represented over 50 people, who have suffered terrible damage from Botox, in their fight to gain compensation from Allergan (the company that creates it) after adverse effects, primarily from off-label medical use.

“About 15 per cent of my clients came to me for damage caused after cosmetic Botox.”

One of these cases involved an accomplished doctor, who decided to get cosmetic Botox injections. After the second round of injections, she suffered severe generalised weakness that left her unable to leave her bed. She eventually went to the National Institute of Health and was diagnosed with botulism caused by the use of medicinal Botox.

She was forced to give up her medical practice due to her illness, and decided to take Allergan to court. In a landmark case, they won the case, with a US$15 million payment.

Allergan did not respond to Canvas, despite repeated attempts for comment.

Botox flu and other concerning and ongoing symptoms are shared regularly on the Facebook page Botox Dysport (Side Effects) Support, which has nearly 9000 members. It is an international group. Some of these people been left seriously and chronically ill after treatment.

Jane* (name changed for confidentiality) is one of them. The formerly active and healthyhospitality worker (“I’d never had a sick day in my life before Botox,” she reveals) had to go on a sickness benefit due to the side effects after one injection for cosmetic use.

Jane decided to have a treatment at a South Island clinic after her mother died and left her some money. “I had two frown lines in my forehead that I thought I would have removed,” she says.

Attending Caci Clinic April 2018, she was given a consent form with masses of small print: “I didn’t really read it, it was just handed to me to sign.” She says she didn’t see the possible side effects or the black box warning.

The day after the treatment (a “low dose” of 20 units) she started to feel terrible. Dripping with sweat, her face was tight, she felt like her body was shutting down. Terrified, she called the clinic.

“I was told by a nurse that Botox could cause flu-like symptoms, which should go in a few days.”

They didn’t. She would go on to experience massive panic attacks, shaking, and pins and needles. Her hair fell out, she couldn’t eat (going from 53kg to 30kg) and had terrible stomach pains.

“Then I started spitting up blood,” she says. “I went with my sister to the hospital, and I was monitored. They thought I must have an ulcer, but it wasn’t that.”

She was so sick that she was unable to leave the couch for months and had to leave her job. Now approaching two years since her Botox treatment, she is much better, but still unable to work full time.

“I have never been so ill in my life. There is no other explanation for my symptoms: they occurred the day after I had Botox. But no doctors seem to know anything about this.”

Ellen Selkon is a GP and the treasurer of the New Zealand Society of Cosmetic Medicine. She says that while there is a risk of cosmetic Botox travelling to other muscles, the toxin travelling beyond a few millimetres is “not at all common and in most cases hasn’t been proven”.

“Spread tends to be dose-dependent and due to the fact that we are using must smaller doses in cosmetic Botox than therapeutic Botox it is not a proven complication – especially not for respiratory muscles and swallowing issues,” she says.

She says that she has never had a patient come to her with a serious adverse event after botulinum treatment: “I have asked a number of my senior colleagues, and nobody I know has had one either”.

Selkon’s statement came as a surprise to Sarah*. She was having regular Botox treatments when she started to notice some strange symptoms.

“In 2018 I started to get a really stiff neck that clicked a lot, burning nerve pain in my back, frequent UTIs and I had my first major migraine (vomiting on the way home from work). I went to the GP and all my bloods looked great so I carried on and tried to ignore these issues.”

In March 2019, she had her last Botox injection. “Two days later all hell broke loose, I was very ill. I was at work when suddenly I experienced awful rushes of adrenaline through my body and a very high heart rate as well as dizziness, and my leg started tingling and going numb.”

She was rushed to the ER as her heart rate could not be reduced in the ambulance, staying overnight. She was vomiting, tingling and “the numbness through my legs continued, I felt like my head was squeezed in a vice, awful sinus pain and pressure.

“The hospital did a lung x-ray and blood clot tests, two bags of IV fluids and I was sent home the next day as they couldn’t find anything wrong.”

Over the next year she became even sicker, with sweating, muscle twitches throughout her body, muscle atrophy and weakness, weight loss, anxiety, neck pain, nerve pain, “numbness in my legs and high/low heart rate continued, fatigue, trouble swallowing . . . “I’m sure I’ve forgotten some”.

She saw many specialists, had “MRIs of my brain and spine, CT scans of my sinuses and abdomen, X-rays of my lungs, ultrasounds of my abdomen, heart and thyroid, and many blood tests.”

She went to see Selkon (her family GP) and asked whether her Botox treatment at the clinic could be the cause.

“I was very active and healthy before and now I was very sick, however, nobody could figure out exactly what was wrong,” says Sarah.

When contacted, Selkon told Canvas:

“Initially, it was not disclosed that she had any form of Botox treatment when she presented with various symptoms. It was only at her third consultation that in passing she stated that she had Botox treatments on numerous occasions, the last one being prior to her symptom onset. She had never had any side effects from her previous Botox treatments. I am unaware of the area and the dose used in the treatment by the practitioner who treated her.”

Sarah started to do her own research, learning about the black box warnings and finding a Facebook group with other people suffering the exact same symptoms.

“I knew it was Botox, thatI had suffered Iatrogenic botulism poisoning. I reported my side effects to CARM and received a reply saying they had received other reports where people had suffered the same or similar symptoms.”

She is now “90 per cent better”, but has to “be gentle with my body and remember what’s it been through.”

Selkon says as these symptoms and signs mentioned can be extremely debilitating and alter patients’ lives, it should become part of the consent process, despite it being very rare.

“One always needs to take into account that all medication has potential side effects.It would be beneficial if there was a test to determine if a patient’s symptoms were as a result of chronic fatigue, post-viral, autoimmune disorder or in fact as a result of their Botox treatment, as these can be extremely difficult to distinguish from one another,” says Selkon.

“I liken it to Russian roulette,” says Jane. “You may be totally fine, but you may not be. If people make the decision to have Botox after being made aware of the possible side effects, it’s up to them. But there needs to be much more information available on the harm it can cause.”

*All the names have been changed to protect the privacy of those affected.

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