It can be scary when someone you love is sick. It can be especially scary if they’re diagnosed with a mental illness. It’s hard to see someone you love in pain and it’s confusing when someone you know well is not acting like themselves.
You know how you would take care of them if they had a cold or flu, but what do you do for a mental illness? Like any other health problem, someone with a mental illness needs extra love and support. You may not be able to see the illness, but it doesn’t mean that you’re powerless to help.
How can I help?
Research confirms that support from family and friends is a key part of helping someone who is going through a mental illness. This support provides a network of practical and emotional help.
These networks can be made up of parents, children, siblings, spouses or partners, extended families, close friends and others who care about us like neighbours, coworkers, coaches and teachers. Some people have larger networks than others, but most of us have at least a few people who are there for us when we need them.
There are a number of major ways that family and friends can help in someone’s journey of recovery from a mental illness:
Knowing when something is wrong—or right: Getting help early is an important part of treating mental illness. Family and friends are often the first ones to notice that something is wrong. See “How do I know when to help?” on the next page for signs to watch for. Finding a treatment that works is often a process of trial and error, so family members may also be the first to see signs of improvement.
How do I do this?
TIP: Learn more about the signs and symptoms of different mental illnesses. Also learn more about how treatments work so that you know what side effects you may see, when to look for improvements and which ones to look for first. A recent review found that when the family is educated about the illness, the rates of relapse in their loved ones were reduced by half in the first year.
Seeking help: Families and friends can be important advocates to help loved ones get through those hard, early stages of having a mental illness. They can help their loved one find out what treatment is best for them. They can also be key in letting professionals know what’s going on, filling in parts of the picture that the person who’s ill may not be well enough to describe on their own.
How do I do this?
TIP: Offer to make those first appointments with a family doctor to find out what’s wrong or accompany your loved one to the doctor—these steps can be hard if your loved one doesn’t have much energy or experiences problems with concentration. If you do accompany the person, work with them to write down any notes or questions either of you have in advance so that you cover all the major points. If your loved one wants to do it on their own, show them your support and ask them if there’s anything you could do to help.
TIP: You can’t always prevent a mental health crisis from happening. If your loved one needs to go to hospital, try and encourage them to go on their own. If you’re concerned that your loved one is at risk of harm, they may receive treatment under BC’s Mental Health Act. It may be necessary in certain cases, but involuntary treatment can be complicated and traumatic for everyone. To learn more about the Mental Health Act, see the “Coping with Mental Health Crises and Emergencies” info sheet.
Helping with medications, appointments and treatments: If you spend a lot of time around your loved ones, you can help them remember to take their medications. You may also be able to help tell a doctor why medications aren’t being taken as they should be. Similarly, you may be involved in reminding your loved one to do their counselling homework or use their light therapy treatment each morning, or reminding your loved one to make or keep appointments for treatment.
How do I do this?
TIP: If you notice that your loved one is having trouble taking their medication, you can encourage them to talk to their doctor or pharmacist. They can suggest ways to make pill taking easier. If there are other problems with taking medicine, such as side effects, encourage your loved one to write down their concerns and questions and talk to their doctor. If they don’t have a good relationship with their doctor, help them find a new one. If cost is a barrier, learn about BC’s no-charge psychiatric medication coverage called Plan G.
Supporting a healthy lifestyle: Families can also help with day-to-day factors such as finances, problem solving, housing, nutrition, recreation and exercise, and proper sleeping habits.
How do I do this?
TIP: See our Wellness Modules at http://www.heretohelp.bc.ca for practical tips on how to have a healthy lifestyle for both you and your loved one. Case managers and peer support workers at mental health centres in your community may be able to help with life skills training as well as connections to income and housing.
Providing emotional support: You can play an important role in helping someone who’s not feeling well feel less alone and ashamed. They are not to blame for their illness, but they may feel that they are, or may be getting that message from others. You can help encourage hope.
How do I do this?
TIP: Try to be as supportive, understanding and patient as possible. See our “Where do I go from here?” section for resources on how to be a good communicator.
TIP: Taking care of an ill family member or friend can be stressful. Remember that you need emotional support, too. Consider joining a support group for family members of people with mental illness. There, you can connect with other people going through the same things and they can help you work through your own emotions. It’s very important to make sure you are taking care of your own mental health as well….To be continued
When the novel coronavirus began to spread across the world in February 2020, Freya Sawbridge was caught in a bind. The 27-year-old was living in Scotland, but when businesses and borders began to close she packed up and flew home to Auckland, New Zealand. On arrival, she felt feverish and couldn’t smell or taste food.
In those early months of COVID-19, every new symptom made global headlines. Freya got tested and the result came back positive. Panic began to set in. “I was in the first wave,” she says.
“There weren’t many people that had had it by that stage, so I knew no-one could tell me anything about it, no-one could offer me any real guidance because it was a new disease.
“No-one can tell you anything about it or when it might end. You’re just existing in the unknown.”
Freya found herself on a vicious merry-go-round of symptoms — fever, sore throat, dizziness, muscle spasms, numbness, chest pains and fatigue. The symptoms kept coming around and around and around.
After 12 days, she stabilised, but four days later the pains returned with a vengeance. It would be a sign of things to come. Freya would relapse five more times over the next six months.
“Each relapse, the depth of it would last about 10 days and then I would take about four or five days emerging from it, have about two or three symptom-free days before another relapse would kick off,” Freya says. “The symptoms would come and then dissipate…
“I’d have a fever for an hour, a sore throat for four hours, then dizziness for two hours, then I was OK for an hour.
“…it was just a cycle like that.”
By April 2020, “long COVID” was being mentioned in Facebook support groups. It’s not an official medical term; it was coined out of necessity by the public. It’s sometimes also referred to as long-haul COVID, chronic COVID and post-acute sequelae of COVID-19 (PASC).
Exactly what constitutes long COVID remains extremely broad. Earlier this month, the World Health Organization released its clinical case definition of what it calls ‘post COVID-19 condition’, which affects people at least two months after a COVID-19 infection with symptoms that “cannot be explained by an alternative diagnosis”.
For Freya, symptoms like chest pain and a sore throat were manageable, but the dizziness and “brain pain” she experienced were debilitating. “It’s as if there was like a mini person in my brain and he was scraping my whole brain with a rake, it was just pain,” Freya says.
“And then it would feel like it would flip on itself continuously and so it makes it really hard to sleep because you’re lying there and it feels like your brain is doing somersaults and then it’s also spinning.”
The memory loss was especially unnerving. “Heaps of people say, ‘Oh, I get that and I’m young,’ but it just feels different… you’d be mid-sentence and then completely forget what you’re talking about.”
Doctors couldn’t give Freya any clarity about what was happening to her because the reality was no-one knew enough about COVID-19.
The hardest was month four, when Freya ended up in hospital from her long COVID symptoms. In a journal entry dated August 24, 2020, she wrote: “Must stay hopeful. Must believe I will get better.” After so many relapses, she had fallen into a depression filled with grief, for her healthy body and her old life.
To this day, we still know very little about long COVID, including just how many people it affects.
Various studies over the past 18 months estimate long COVID can affect anywhere from 2.3 per cent to 76 per cent of COVID-19 cases. It’s important to remember these studies vary in method, with some tracking only hospitalised cases and some relying on self-reported surveys.
A comprehensive study by the University of NSW places the figure at around 5 per cent. Researchers tracked 94 per cent of all COVID-19 cases in NSW from January to May 2020. Of the 3,000 people surveyed, 4.8 per cent still had symptoms after three months.
The uncertainty doesn’t end there. We also have no idea why long COVID hits certain people, but not others. It’s been likened to a kind of “Russian roulette”.
Studies have consistently found long COVID to be more prevalent in women, older people and those with underlying conditions, but there’s evidence to indicate children are capable of developing long COVID too.
Being young and fit is no guarantee you’re safe either, and nor is having a minor initial COVID case. The longer-term symptoms can strike even those who had few initial symptoms.
Those with long COVID report a constellation of symptoms including fatigue, dizziness, shortness of breath, brain fog, memory loss, loss of taste and smell, numbness, muscle spasms and irritable bowels.
One of Australia’s leading researchers in the area, Professor Gail Matthews, says long COVID is likely a spectrum of different pathologies.
Dr Matthews is the Head of Infectious Diseases at St Vincent’s Hospital and Head of the Therapeutic Vaccine and Research Program at the Kirby Institute at UNSW. She says the issue of long COVID will be huge on a global scale and it’s crucial to understand it better.
One theory is that COVID-19 can trigger the immune system to behave in an abnormal way, releasing cytokines that can make you feel unwell with fatigue and other symptoms.
Another is that there could be some elements of the virus — called antigen persistence — somewhere in the body that continues to trigger an ongoing activation in the immune system.
There’s also early evidence that vaccination might help reduce or even prevent long-term symptoms. Freya stopped relapsing around month seven, although her senses of taste and smell still haven’t fully recovered. She says rest was a big part of her recovery.
“Other people, if they don’t have parental support, or they have to work because they’ve got no savings, or they can’t rely on their parents, or they have young kids — I have no idea how they got through it, because it would have been impossible in my eyes,” Freya says.
Judy Li is in an impossible situation. An all-encompassing fatigue has taken hold of her mind and body, stripping away her ability to work, parent or plan for the future.
The 37-year-old got COVID-19 in March 2020 while an inpatient at a Melbourne hospital. She had been struggling after giving birth to her second child and was getting the help she needed.
Despite her anxieties, Judy’s case was very mild and it wasn’t until three months later when her three-year-old brought a bug home from day care that she realised something was wrong.
As day-care bugs so often do, it ripped through the young family. “It felt like I hit a brick wall, I was a lot worse than everyone else,” Judy says.
“It wasn’t the usual symptoms… I was just really lethargic, really fatigued and I remember at about the three-week mark of having those symptoms, that kind of fatigue, I thought, ‘this isn’t right, this is a bit odd.’”
Her fatigue is not like being tired, it’s a different kind of exhaustion, a severe lack of energy that doesn’t replenish after sleep.
“This is like something you feel in your limbs; you feel like they’re really heavy, they’ve got this kind of, I wouldn’t say ouch-kind of pain, but it’s sort of an achiness to your limbs,” she says.
The fatigue comes and goes, but Judy has noticed it can flare up when she gets sick or when she expends herself physically or mentally.
One of the worst episodes came after an eight-hour trip to Canberra for Christmas to visit her in-laws. “I woke up and I was completely paralysed,” Judy says. Distressed, in tears, she could only call out to her partner for help.
“I just did not have the strength to move my limbs and I kept trying and trying and trying and eventually he helped me up. “I sort of dragged my arm up, I could barely hold a glass of water and he’d help me to drink out of it. If I had to go to the toilet, he had to basically carry me.”
This fatigue has derailed Judy’s life because when it sets in, she never knows how long it’s going to last or whether it will go away. It makes work and parenting impossible. Judy’s two young children don’t understand what’s wrong with mum or why she can’t get out of bed.
“When the kids are crying at home, I can’t go and soothe them,” she says.
“This is not a lack of motivation, it’s like I want to get up and I want to go to my children.
“I want to get up, I’ve got work I need to do. I want to get up and even go get something to eat, I’m hungry, but I can’t actually tell my body to move in that way.”
Fatigue or post-exertional malaise is one of the most common symptoms of long COVID, but it’s also a very common symptom in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a biological disease affecting an estimated 250,000 Australians.
There are striking similarities between long COVID and ME/CFS. Both can cause symptoms such as fatigue, dizziness, memory loss or ‘brain fog’, and irritable bowel, and both are likely to encompass a range of different pathologies.
ME/CFS is usually triggered by a viral infection — ebola, dengue fever, glandular fever, epstein barr, ross river virus, SARS and even the more common influenza have all left trails of chronically ill people in their wake.
Experts have even questioned whether long COVID could be ME/CFS by another name, although the jury is still out on that theory. ME/CFS has been around for decades but we still don’t know much about it.
Australian advocacy groups desperately want to see more research and support to help people with this chronic illness navigate medical, financial and accommodation services. They also say doctors need better education to diagnose and treat the condition early on.
Bronwyn Caldwell knows what it’s like to live with a condition that no-one understands or knows how to treat. She’s lived with ME/CFS for 20 years, ever since a suspected case of glandular fever in her 20s.
The 46-year-old from South Australia is adamant the early advice from her doctor to rest was the reason her condition didn’t immediately worsen. She was able to work part-time as a brewer up until 2013 but a relapse has left her mostly bed-bound.
Bronwyn considers herself lucky — her illness was validated by doctors and family, she doesn’t have cognitive difficulties and isn’t in pain. But her voice begins to break when mentioning that most people with ME/CFS face stigma that they’re being lazy or faking their illness.
“I can’t imagine what it’s really like to have everyone in your life say you’re just being lazy, because the reality is all of us beat ourselves up to that all the time,” she says.
A 2018 study published in the Journal of Health Psychology looking at links between people with chronic illness and suicidal ideation found stigma, misunderstanding and unwarranted advice exacerbates patients’ feelings of overall hopelessness.
Long COVID is creating a cohort of people vulnerable to the same thing, and Judy herself has sometimes wondered whether her family would be better off without her (which, of course, it wouldn’t).
“I honestly go through periods where I wish COVID had killed me instead of just left me with this, this big burden,” she says. With no sick leave left, Judy has had to take unpaid time off work.
It’s a big blow for the high-earning, career-driven project manager who took pride in handling stressful situations and juggling multiple tasks. These days, her mind doesn’t work like it used to.
“It’s just little things like struggling to find the word that I just knew… I would know… sorry… like being able to construct sentences,” she says with an ironic laugh.
“I can try to read something but it just seems like I have to read it over and over and over again. “I frequently walk into a room and can’t remember why, when I would put something down, seriously, two minutes later I have no idea where it is. “I just feel like I’m losing my mind.”
In the COVID-ravaged UK, daily cases peaked at more than 68,000 and daily deaths at more than 1,300. It’s a situation few in Australia — where we have enjoyed long periods of little-to-no community transmission — can fully appreciate.
Adam Attia was living in London through most of 2020 and says it was almost rare if you hadn’t had COVID-19. “I’ve known of people that had given it to their parents and it killed their parents,” the 30-year-old Australian says. “People that we knew on our street had passed away.”
So one day around August, when Adam couldn’t taste the wasabi on his sushi, he immediately knew what was wrong. “I just started to go through the kitchen for things like garlic — I had a whole garlic, I couldn’t taste anything. I ate a lemon like an apple and couldn’t taste a thing.
“I ate ginger like a cannibal, like I ate it with all of the bumps and things on it and couldn’t taste a thing.”
But Adam’s infection was mild and he spent his 10-day isolation staying active. Life went on as normal until three months later, after a trip to Croatia. On the flight back to London, somewhere above Germany, Adam felt an excruciating pain in his stomach. He felt like he was going to vomit, he couldn’t breathe and his head began to spin.
The flight crew didn’t know what to do, contemplating an emergency landing in Berlin while Adam desperately sucked air from a vent they’d given to help him breathe.
The flight managed to land in London and Adam was escorted off the plane. At the hospital, doctors ran tests for internal bleeding and signs of reflux or gastritis but they all turned up empty.
In the weeks and months after that flight, as little as two hours of work would leave Adam shattered and disorientated.
His symptoms are like dominoes. Exhaustion leads to stomach pain, which leads to nausea, faintness and breathlessness.
Adam has learned to manage his symptoms and as soon as he feels the exhaustion creeping in he takes an anti-nausea pill, uses the asthma puffer he now has to carry with him and finds somewhere to lie down.
He ended up moving back to Australia to sort out his health issues, but it wasn’t until a doctor at St George Hospital in Sydney mentioned Adam’s symptoms could be an effect of COVID-19 that he twigged.
“Is it from COVID? Look, I could be shooting in the dark, I don’t actually know,” Adam says. “But what I do know is I didn’t have these [symptoms] before COVID, so I guess it’s more of an educated guess.”
Much about long COVID remains exactly that. More research is needed to really know what’s going on.
The US and UK have allocated billions of dollars into research and set up long COVID clinics to help patients find the right treatment. The Australian government has provided $15 million for research grants into the long-term health effects of COVID-19 and the nation’s vaccination efforts through the Medical Research Future Fund.
As Australia moves beyond lockdowns towards a future where most Australians are vaccinated, borders are open and COVID-19 is actively spreading through communities, this research will be crucial in our understanding of the long-term health issues and the impact on individuals, families, workplaces and the economy.
For now, Dr Matthews says the biggest take-home is that we don’t know who is or isn’t susceptible to long COVID.
“One of the biggest messages is that it’s very hard to know who this will strike.”
Health officials in Victoria have already highlighted the plight of long COVID patients as part of their drive to encourage more people to get vaccinated, as experts say it probably can prevent long COVID.
Dr Matthews says it’s important Australia recognises long COVID as a real issue and makes sure there is appropriate support to help people.
“Even if it’s just an understanding that this condition exists, and recognition that it exists, as opposed to expecting these people to return to full health,” she says.
But until we know more, those like Freya, Judy and Adam won’t have the closure of knowing exactly what’s happened to them.
“It’s hard to wrap your head around,” Judy says, “to say this is potentially a life sentence”. “There’s no defining this is as bad as it gets, you know? “This is just the big mystery question mark.”
This week Pfizer and BioNTech said that their COVID-19 vaccine was safe for children aged 5 to 11. If approved by the FDA for emergency use, it could be ready for children as early as late October. Since the emergence of the delta variant, children have accounted for more than one in five new cases, and more children are hospitalized now, as a result of the coronavirus, than at any other time in the pandemic.
The concern and frustration surrounding relatively slow approval of treatment for kids under 12 years old is nothing new. For decades, kids with cancer have had to wait for trials to improve drug options and improve patient outcomes.
The call to do more, faster, has gone unanswered by drug companies who don’t invest in trials for a small number of unprofitable kids and by the National Cancer Institute (NCI), which allocates only 4% of its annual $6.56 billion budget to pediatric cancer and other rare diseases.
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Trials are a key component to curing cancer and achieving vaccine safety, yet come with a caveat that most parents aren’t willing to risk. It feels good to help mankind, but not at the expense of their child’s growing body.
In 2010, my husband and I agreed to send my 4-year-old daughter to trial to treat her stage IV high-risk neuroblastoma. Emily’s oncologist was desperate to enroll kids in the trial and we were desperate to get rid of the cancer. It was the most difficult decision we’ve ever made.
Emily received two back-to-back stem cell transplants. The theory was that two transplants — as opposed to one that was the protocol of care — would be better at killing the tricky neuroblastoma cells that often lurked and caused a relapse.
It would seem a no-brainer to want two opportunities to kill the cancer cells, but it wasn’t. Kids died during the transplants. The amount of chemo they got in one transplant would kill an adult instantly, but kids metabolized it quicker, so they lived, but just barely. Three weeks after being discharged from the first transplant, a kid in the trial would be admitted into the hospital for the second one. If the neuroblastoma didn’t kill them, the trial protocol might.
We wanted to do everything possible to prevent Emily from dying, so we agreed to the trial. We weren’t about to wait around for her cancer.
We watched her claw her way through line infections, thick mucus in her lungs and ICU visits. We doubted whether we made the right decision with every obstacle, especially when she needed surgery to drain seven ounces of liquid from her heart during her second transplant.
We wanted to do everything possible to prevent Emily from dying, so we agreed to the trial. We weren’t about to wait around for her cancer.
Emilyalmost got kicked out of the trial in the last few months when her damaged kidneys were failing and dipped below the trial parameters. After her tandem stem cell transplants, 21 rounds of radiation, and months of an experimental antibody therapy, she was so close to finishing. Yet somehow, with the help of smart doctors and more medicine, she finished the trial.
After 18 months, the trial was successful in eliminating Emily’s body of neuroblastoma cells, but it stole parts of her she’d never get back.
Emily, who’s now 16, has chronic kidney disease, estrogen levels of a post-menopausal woman, stunted growth, frail hair and a 65% bi-lateral hearing loss from the toxic drugs used during the trial protocol. It’s been the catch-22 of a lifetime: Agreeing to have her participate in a trial that saved her life, but also compromised the quality of it.
About a year after Emily finished treatment, when she was 5, the trial she’d been enrolled in was stopped early. The data showed that the kids who had received two transplants were relapsing less and had a significantly better chance of survival than the kids who had received one transplant. It worked.
As a result, 300 to 400 kids a year who are diagnosed with stage IV neuroblastoma receive the protocol of care that Emily helped pioneer 10 years ago.
Despite the dark days of treatment and unpredictable secondary effects from chemo,I would make the same decision again, and send her into the trial. Emily would agree, though she longs for the hair that didn’t grow back well after treatment. We know how much worse the alternative could have been. She might not be alive, picking out a homecoming dress and watching Tik Tok videos for hours a day. She might be a statistic.
[The COVID vaccine trials] serve as a gatekeeper to kids’ health from a nation that doesn’t like to wait.
And now a nation of parents looks toward science to approve a COVID-19 vaccine to keep their kids from being statistics, too. The American Academy of Pediatrics reported 225,978 child COVID-19 cases last week, nearly 26% of the weekly reported cases. It’s the second-highest total of new diagnoses among children over the course of the pandemic.
As desperate as we are for our children to get their COVID-19 vaccines, the trial pharmaceutical companies are running — and the in-depth data analysis the FDA undertakes — exists to protect millions of kids from adverse effects that can’t be predicted. It serves as a gatekeeper to kids’ health from a nation that doesn’t like to wait.
When the FDA approves a vaccine for kids — and they will — let’s acknowledge the kids who, like Emily, answered the call. They’re the unsung heroes in getting a nation back to health.
Cognoscenti contributor Amy McHugh is a high school teacher on Cape Cod where she lives with her husband, two teenage daughters, and two goldendoodles. She’s helped raise over $750,000 for neuroblastoma research at Dana-Farber’s Jimmy Fund Clinic.
“VFC Childhood Vaccine Supply Policy”. Vaccines for Children Program (VFC). Centers for Disease Control and Prevention. February 18, 2016. Retrieved March 5, 2019.
“VFC Home”. Vaccines for Children Program (VFC). Centers for Disease Control and Prevention. February 18, 2016. Retrieved March 5, 2019.
Institute of Medicine (US) Committee on the Evaluation of Vaccine Purchase Financing in the United States (2003). “Executive Summary”. Financing Vaccines in the 21st Century: Assuring Access and Availability. Washington, DC: National Academies Press.
You’re doing everything right—you visit your healthcare provider regularly, you take your relapsing MS medication exactly as it is prescribed—so why does it feel like that’s still not enough? It could be that you’re continuing to experience frequent relapses—a sign that your treatment may not be working well enough.
Knowing when it’s a relapse
Relapses, also known as flare-ups, are when new or existing symptoms appear or worsen, lasting for at least 24 hours and sometimes for as long as several weeks or months. While MS affects everyone differently, there are some common symptoms that people may experience during a relapse. Perhaps you’ve experienced one or more of the following symptoms.
Accepting frequent relapses as “just part of living with relapsing MS” is not a good plan. If you’re on a treatment but still feel like you’re experiencing too many relapses, it could be time for you to learn about LEMTRADA.
LEMTRADA is not approved to treat individual symptoms of a relapse. Click below to read about the LEMTRADA study and plan to have a discussion with your healthcare provider about your relapsing MS and treatment goals.
Accepting frequent relapses as “just part of living with relapsing MS” is not a good plan. If you’re on a treatment but still feel like you’re experiencing too many relapses, it could be time for you to learn about LEMTRADA.
LEMTRADA is not approved to treat individual symptoms of a relapse. Click below to read about the LEMTRADA study and plan to have a discussion with your healthcare provider about your relapsing MS and treatment goals.
Accepting frequent relapses as “just part of living with relapsing MS” is not a good plan. If you’re on a treatment but still feel like you’re experiencing too many relapses, it could be time for you to learn about LEMTRADA.
LEMTRADA is not approved to treat individual symptoms of a relapse. Click below to read about the LEMTRADA study and plan to have a discussion with your healthcare provider about your relapsing MS and treatment goals.
Accepting frequent relapses as “just part of living with relapsing MS” is not a good plan. If you’re on a treatment but still feel like you’re experiencing too many relapses, it could be time for you to learn about LEMTRADA.
LEMTRADA is not approved to treat individual symptoms of a relapse. Click below to read about the LEMTRADA study and plan to have a discussion with your healthcare provider about your relapsing MS and treatment goals.
Accepting frequent relapses as “just part of living with relapsing MS” is not a good plan. If you’re on a treatment but still feel like you’re experiencing too many relapses, it could be time for you to learn about LEMTRADA.
LEMTRADA is not approved to treat individual symptoms of a relapse. Click below to read about the LEMTRADA study and plan to have a discussion with your healthcare provider about your relapsing MS and treatment goals.
IMPORTANT SAFETY INFORMATION
LEMTRADA can cause serious side effects including:
Serious autoimmune problems: Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death. Serious autoimmune problems may include:
Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
Kidney problems called anti‑glomerular basement membrane disease, which, if not treated, can lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death. Call your healthcare provider right away if you have any of the following symptoms: swelling of your legs or feet; blood in the urine (red or tea‑colored urine); decrease in urine; fatigue; coughing up blood
It is important for you to have blood and urine tests before you receive, while you are receiving and every month for 4 years or longer, after you receive your last LEMTRADA infusion.
Serious infusion reactions: LEMTRADA can cause serious infusion reactions that may cause death. Serious infusion reactions may happen while you receive, or up to 24 hours or longer after you receive LEMTRADA.
You will receive your infusion at a healthcare facility with equipment and staff trained to manage infusion reactions, including serious allergic reactions, and urgent heart or breathing problems. You will be watched while you receive, and for 2 hours or longer after you receive, LEMTRADA. If a serious infusion reaction happens while you are receiving LEMTRADA, your infusion may be stopped.
Tell your healthcare provider right away if you have any of the following symptoms of a serious infusion reaction during the infusion, and after you have left the healthcare facility:
swelling in your mouth or throat
trouble breathing
weakness
fast, slow, or irregular heartbeat
chest pain
rash
To lower your chances of getting a serious infusion reaction, your healthcare provider will give you a medicine called corticosteroids before your first 3 infusions of a treatment course. You may also be given other medicines before or after the infusion to try to reduce your chances of having these reactions or to treat them if they happen.
Stroke and tears in your arteries that supply blood to your brain (carotid and vertebral arteries): Some people have had serious and sometimes deadly strokes and tears in their carotid or vertebral arteries within 3 days of receiving LEMTRADA. Get help right away if you have any of the following symptoms that may be signs of a stroke or tears in your carotid or vertebral arteries:
drooping of parts of your face
weakness on one side
sudden severe headache
difficulty with speech
neck pain
Certain cancers: Receiving LEMTRADA may increase your chance of getting some kinds of cancers, including thyroid cancer, skin cancer (melanoma), and blood cancers called lymphoproliferative disorders and lymphoma. Call your healthcare provider if you have the following symptoms that may be a sign of thyroid cancer:
new lump
swelling in your neck
pain in front of neck
hoarseness or other voice changes that do not go away
trouble swallowing or breathing
cough that is not caused by a cold
Have your skin checked before you start receiving LEMTRADA and each year while you are receiving treatment to monitor for symptoms of skin cancer.
Because of risks of autoimmunity, infusion reactions, and some kinds of cancers, LEMTRADA is only available through a restricted program called the LEMTRADA Risk Evaluation and Mitigation Strategy (REMS) Program.
Do not receive LEMTRADA if you are infected with human immunodeficiency virus (HIV).
Thyroid problems: Some patients taking LEMTRADA may get an overactive thyroid (hyperthyroidism) or an underactive thyroid (hypothyroidism). Call your healthcare provider if you have any of these symptoms:
excessive sweating
unexplained weight loss
fast heartbeat
eye swelling
nervousness
unexplained weight gain
feeling cold
worsening tiredness
constipation
Low blood counts (cytopenias): LEMTRADA may cause a decrease in some types of blood cells. Some people with these low blood counts have increased infections. Call your doctor right away if you have symptoms of cytopenias such as:
weakness
chest pain
yellowing of the skin or whites of the eyes (jaundice)
dark urine
fast heartbeat
Inflammation of the liver: Call your healthcare provider right away if you have symptoms such as unexplained nausea, stomach pain, tiredness, loss of appetite, yellowing of skin or whites of eyes, or bleeding or bruising more easily than normal.
Serious infections: LEMTRADA may cause you to have a serious infection while you receive and after receiving a course of treatment. Serious infections may include:
listeria. People who receive LEMTRADA have an increased chance of getting a bacterial infection called listeria, which can lead to significant complications or death. Avoid foods that may be a source of listeria or make sure foods are heated well.
herpes viral infections. Some people taking LEMTRADA have an increased chance of getting herpes viral infections. Take medicines as prescribed by your healthcare provider to reduce your chances of getting these infections.
tuberculosis. Your healthcare provider should check you for tuberculosis before you receive LEMTRADA.
hepatitis. People who are at high risk of, or are carriers of, hepatitis B (HBV) or hepatitis C (HCV) may be at risk of irreversible liver damage.
These are not all the possible infections that could happen while on LEMTRADA. Call your healthcare provider right away if you have symptoms of a serious infection such as fever or swollen glands. Talk to your healthcare provider before you get vaccinations after receiving LEMTRADA. Certain vaccinations may increase your chances of getting infections.
Progressive multifocal leukoencephalopathy (PML): A rare brain infection that usually leads to death or severe disability has been reported with LEMTRADA. Symptoms of PML get worse over days to weeks. It is important that you call your doctor right away if you have any new or worsening medical problems that have lasted several days, including problems with:
thinking
eyesight
strength
balance
weakness on 1 side of your body
using your arms or legs
Inflammation of the gallbladder without gallstones (acalculous cholecystitis): LEMTRADA may increase your chance of getting inflammation of the gallbladder without gallstones, a serious medical condition that can be life-threatening. Call your healthcare provider right away if you have any of the following symptoms:
stomach pain or discomfort
fever
nausea or vomiting
Swelling of lung tissue (pneumonitis): Some people have had swelling of the lung tissue while receiving LEMTRADA. Call your healthcare provider right away if you have the following symptoms:
shortness of breath
cough
wheezing
chest pain or tightness
coughing up blood
Before receiving LEMTRADA, tell your healthcare provider if you:
have bleeding, thyroid, or kidney problems
have a recent history of infection
are taking a medicine called Campath® (alemtuzumab)
have received a live vaccine in the past 6 weeks before receiving LEMTRADA or plan to receive any live vaccines. Ask your healthcare provider if you are not sure if your vaccine is a live vaccine
are pregnant or plan to become pregnant. LEMTRADA may harm your unborn baby. You should use birth control while receiving LEMTRADA and for 4 months after your course of treatment
are breastfeeding or plan to breastfeed. You and your healthcare provider should decide if you should receive LEMTRADA or breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over‑the‑counter medicines, vitamins, and herbal supplements. LEMTRADA and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take medicines that increase your chance of getting infections, including medicines used to treat cancer or to control your immune system.
The most common side effects of LEMTRADA include:
rash
headache
thyroid problems
fever
swelling of your nose and throat
nausea
urinary tract infection
feeling tired
trouble sleeping
upper respiratory infection
herpes viral infection
hives
itching
fungal infection
joint pain
pain in your arms or legs
back pain
diarrhea
sinus infection
mouth pain or sore throat
tingling sensation
dizziness
stomach pain
sudden redness in face, neck, or chest
vomiting
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of LEMTRADA.
You may report side effects to the FDA at 1-800-FDA-1088.
Listen as Dr. Daniel Ontaneda, Cleveland Clinic Mellen Center for Multiple Sclerosis Treatment and Research, reviews relapses in the MS disease course, what a relapse is, and why it is important to better understand them with one of his patients. For more information about MS relapse or other related MS questions, visit http://my.clevelandclinic.org/service….
