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Millions rely on wheelchairs for mobility, but repair delays are hurting users

More than five million Americans use wheelchairs. Getting one repaired is hard.

A father dressed in a dark sweatshirt and jeans is seated in a wheelchair plays with his two young children on a tire swing at a playground

Wheelchairs restore mobility to people who are unable to walk or have limited ability to do so. Over a lifetime, this may describe many of us due to changes in health, injuries, neurological conditions, or disabling conditions like arthritis. So, when wheelchair technology or parts quit working, a quick fix would seem essential, right?

I know this firsthand. Unable to walk from decades with multiple sclerosis, I keep small scooters on every floor of my 1911 home, which is further adapted for accessibility with stair lifts and ramps. One day when I turned on my second-floor scooter-type wheelchair, sparks arced from the tiller opening atop the steering column, followed by smoke and the acrid smell of burning electrical wires. It was late on a Friday afternoon. No emergency repair service exists for wheelchairs or scooters. Now what?

Wheelchair repair delays are far more than an annoyance

Wheelchairs allow millions of Americans with mobility disability to participate in daily activities and community life (note: automatic download). We know this improves physical and mental well-being and overall quality of life.

On that Friday, my only option was to have my husband bring my first-floor scooter to the second floor. There I stayed, awaiting repairs on the now-inoperable scooter while my husband brought my meals upstairs. Because I have used the same small assistive technology company for more than 20 years — and have the owner’s cell phone number — by midafternoon on Tuesday, I once again had functional scooters on both floors. My confinement had lasted only four days. I know I was lucky on many levels.

But what if I lived alone, didn’t have another operational scooter, or hadn’t been able to wait four days? And what about people experiencing far longer waits for help with an essential device? While the 1990 Americans with Disabilities Act (ADA) prohibits discriminatory policies and requires physical accessibility in public services and spaces, it says nothing about this issue.

How often do wheelchairs break down?

Ideally, a wheelchair should be safe, reliable, and match your activity goals and functional needs. It should provide strong postural support and seating that protects against pressure injuries. Depending on strength and endurance, you might wish to self-propel a manual wheelchair. Or you might need a mobility scooter or power wheelchair propelled by a battery-powered motor, one that might even have sip-and-puff operational assistance or a chin-operated trackball.

Regardless of complexity, however — from basic manual wheelchairs to sophisticated rehab power chairs — all wheelchairs can break down, leaving their users stranded. Factors like broken pavement, inadequate curb cuts or soft terrain, steep inclines and inclement weather, and poor wheelchair design pretty much guarantee this.

In one study of 591 wheelchair users with spinal cord injury, 64% reported needing at least one wheelchair repair in the past six months. Among users requiring just one repair, wheels and casters posed the most difficulties for manual wheelchairs (46%). Electrical systems (29%) and power/control systems (27%) caused most problems for power wheelchair users. Rates of wheelchair breakdowns have increased in recent years, and vary across wheelchair manufacturers.

Repairs are costly, in more than one way. A survey of 533 wheelchair users with spinal cord injury found:

  • Out-of-pocket repair costs ranged from $50 to $620 (the median, or midpoint, cost was $150).
  • Time spent experiencing adverse consequences from wheelchair breakdown before repair ranged from two to 17 days (five days was the median).
  • Among those reporting adverse consequences, 27% were stranded inside their home, 12% were stuck in bed, and 9% were stranded outside their home.

Wheelchair repair delays are lengthening: Could right to repair laws help?

Lengthening repair delays (automatic download) that heighten risks to consumers’ physical and mental health have caused many wheelchair users across the US to voice their outrage. However, reducing repair wait times isn’t simple. Medicare moved to competitive bidding in 2011, causing most small vendors — like my assistive technology company — to leave the business.

The two behemoths owned by private equity firms that now dominate the marketplace focus on boosting profits and cutting costs. By reducing technician hours and parts inventories, restricting consumers’ access to parts and software passcodes, requiring pre-approvals from insurers for repairs, and other practices, these companies virtually ensure delayed repairs.

Furthermore, Medicare and other insurers do not pay for preventive maintenance such as tightening loose bolts and cleaning casters, allowing problems to go undetected until breakdowns occur. Training can allow some wheelchair users to perform preventive maintenance tasks, but such training programs are not widely available.

Trying to reduce repair delays, Colorado’s governor recently signed the first “right to repair” law in the US for power wheelchair users. Complex software programs control many functions of power wheelchairs, and by holding this software as trade secrets, the manufacturers and large vendors have forced consumers needing repairs to use their services.

Much like recent right to repair laws for cars, the Colorado law mandates that power wheelchair owners and independent repair shops have access to the embedded software tools, parts, and other resources required to diagnose, maintain, or repair power wheelchairs. Other states, such as Massachusetts, may follow. Power wheelchair users in Massachusetts are testifying at public hearings about their repair horror stories to motivate the legislature to act.

Given the complexities of the wheelchair industry, it’s not clear whether right to repair laws will shorten repair times for power wheelchairs. Additionally, this law does not address manual wheelchairs or scooters like mine. Clearly, much more remains to be done to ensure timely wheelchair repairs. As wheelchair use surges, with growing numbers of baby boomers with mobility disability wanting to remain active in their communities, solving the wheelchair repair crisis is increasingly urgent.

About the Author

photo of Lisa I. Iezzoni, MD, MSc

Lisa I. Iezzoni, MD, MSc, Contributor

Lisa I. Iezzoni, MD, MSc, is a professor of medicine at Harvard Medical School, and is based at Massachusetts General Hospital in Boston. Dr. Iezzoni studies health care experiences of persons with disability. She is a … See Full Bio View all posts by Lisa I. Iezzoni, MD, MSc

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Managing weight gain from psychiatric medications

cropped photo of the hands of a mental health professional holding in right hand a medication bottle containing pills, in left hand a pen; out of focus is the torso of a patient sitting in front of the desk

While psychiatric medications can be essential for improving mental health and well-being, they often come with unwanted side effects. One particular side effect of many psychiatric medications is weight gain. In this post we will explore how these medications cause weight gain, and what you can do to lessen the impact of this unwanted effect of many psychiatric medications.

What are the different types of psychiatric medications?

There are five main types of psychiatric prescription medications: antidepressants, antipsychotics, anxiolytics (also known as anti-anxiety medications, which can include medications for sleep), mood stabilizers, and stimulants. Stimulants are not likely to cause weight gain. In fact, many of them reduce appetite and can cause weight loss as a side effect. These medications will not be discussed in this post.

Antidepressants can be divided into separate classes:

  • SSRIs, or selective serotonin reuptake inhibitors, increase serotonin levels in the brain.
  • SNRIs, or serotonin-norepinephrine reuptake inhibitors, increase both serotonin and norepinephrine in the brain.
  • TCAs, or tricyclic antidepressants, increase serotonin, norepinephrine, and dopamine in the brain.
  • MAOIs, or monoamine oxidase inhibitors, increase serotonin, dopamine, and norepinephrine in the brain.

Why do antidepressants cause weight changes?

All of these medications increase serotonin levels in the brain. Serotonin regulates mood and affects appetite, yet this can have varying results depending on length of treatment. Short-term use reduces impulsivity and increases satiety, which can reduce food intake and cause weight loss. However, long-term use (longer than a year) can cause downregulation of serotonin receptors, which subsequently causes cravings for carbohydrate-rich foods such as bread, pasta, and sweets that ultimately may lead to weight gain. The antidepressants with the highest risk of causing weight gain are amitriptyline, citalopram, mirtazapine, nortriptyline, trimipramine, paroxetine, and phenelzine.

Why do antipsychotic medications worsen obesity-related diseases?

Antipsychotics can also be categorized into two classes: typical and atypical antipsychotics. Both classes can cause weight gain, but they differ in that atypical antipsychotics cause fewer movement disorder side effects. Like antidepressants, antipsychotics affect the chemical messengers in the brain associated with appetite control and energy metabolism, namely serotonin, dopamine, histamine, and muscarinic receptors. In addition to causing weight gain, antipsychotics can also impair glucose metabolism, increase cholesterol and triglyceride levels, and cause hypertension, all of which can lead to metabolic syndrome and worsen obesity-related diseases. The antipsychotics most likely to cause weight gain are olanzapine, risperidone, and quetiapine.

What about anti-anxiety medications and weight changes?

There is no clear link between traditional anti-anxiety medications such as benzodiazepines and weight gain. However, many antidepressants are also used for the treatment of anxiety, and may cause weight gain as discussed above.

Similarly, not all medications for sleep cause weight gain; one that has been associated with weight gain is diphenhydramine (the active ingredient in Benadryl that is also used in many over-the-counter sleep aids). Diphenhydramine can contribute to weight gain by causing increased hunger and tiredness, which can make a person less active. Other sleep aids such as zolpidem (Ambien) or eszopiclone (Lunesta) have not been linked to weight gain.

Trazodone, a medication used for depression as well as insomnia, reduces excess serotonin at some sites, while increasing serotonin levels at other sites, thus affecting appetite as previously discussed.

Mood stabilizers are often used to treat bipolar disease, and can increase appetite or cause changes in metabolism. Although some antidepressants and antipsychotics are also used to treat bipolar disease, mood stabilizers such as lithium, valproic acid, divalproex sodium, carbamazepine, and lamotrigine are the mood stabilizers often used for treatment of bipolar disorder, and with the exception of lamotrigine, they are all known to increase the risk of weight gain.

There are effective strategies to minimize weight gain

For people taking psychiatric medications for mental health, there are strategies to minimize weight gain. Optimizing lifestyle and daily habits is important. This includes eating a healthy diet with whole foods and limiting processed foods and added sugars; staying physically active; minimizing stress; and ensuring adequate restful sleep. Physical activity, in particular, can have a double effect of both improving mental health and minimizing weight gain that might otherwise occur. Cognitive and behavioral strategies under the guidance of a psychologist may be useful for avoiding giving in to any increased cravings for sweets and carbohydrates.

Another strategy to minimize weight gain is to work with your healthcare provider to determine if there might be an appropriate alternate medication option with a lower risk of weight gain. In addition, the anti-diabetes medication metformin has been shown to be effective in treating and preventing psychotropic-induced weight gain. Other medications prescribed for weight loss may also be appropriate to help counteract the weight gain experienced by psychotropic medications.

Be aware that almost all medications have a risk of causing side effects, and it is important to ensure that the benefits of taking any medications will outweigh the risks. Speaking to your primary care provider, psychiatrist, or obesity medicine specialist can be useful in determining which options may work best for you.

About the Author

photo of Chika Anekwe, MD, MPH

Chika Anekwe, MD, MPH, Contributor

Chika V. Anekwe, MD, MPH is an obesity medicine physician at Massachusetts General Hospital (MGH) Weight Center and Instructor in Medicine at Harvard Medical School (HMS). Her professional interests are in the areas of clinical nutrition, … See Full Bio View all posts by Chika Anekwe, MD, MPH

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Promising therapy if PSA rises after prostate cancer surgery

Research shows a promising new option for men who experience rising PSA after a radical prostatectomy.

Tightly cropped photo of a sheet of paper showing prostate cancer test results with a blood sample tube, stethoscope, and a pen all resting on top of it

Many men who undergo surgical treatment for prostate cancer (a radical prostatectomy) live out their lives without a recurrence of their disease. But 20% to 40% of them will experience a rise in prostate-specific antigen (PSA) levels within 10 years of the operation. PSA should be undetectable in blood if the prostate has been removed, so elevated levels signify that the cancer may have returned. Doctors call this a biochemical relapse, and ordinarily they treat it by giving radiation to the prostate bed, which is where the prostate resided before it was taken out. Referred to as pelvic bed radiation therapy, or PBRT, this sort of treatment often succeeds in bringing PSA back down to zero for years.

Now, a large study shows that PBRT is even more effective when combined with other treatments. The findings are a potential game-changer for men experiencing a biochemical relapse after radical prostatectomy.

Funded by the National Cancer Institute, the SPPORT phase 3 clinical trial was conducted at nearly 300 medical centers across the United States, Canada, and Israel. A total of 1,797 men were enrolled between 2008 and 2015, all with post-surgical PSA levels ranging between 1 and 2 nanograms per milliliter (ng/mL).

The subjects were randomly assigned in roughly equal numbers to one of three groups. The men in group 1 got PBRT by itself, while men in group 2 got PBRT combined with four to six months of androgen deprivation therapy, or ADT. (Also known as hormonal therapy, ADT blocks testosterone, a hormone, or androgen, that fuels growing prostate tumors.) The men in group 3 got PBRT, ADT, and also radiation to the pelvic lymph nodes, where prostate cancer typically goes first if it begins to spread. The investigators wanted to know which of these three strategies is most effective at keeping disease progression at bay.

Results, side effects, and what’s next

According to their results, the more intensive treatments led to better outcomes. Just over 70% of men in group 1 were still avoiding disease progression after five years, compared with 80.3% of men in group 2 and 87.4% of men in group 3. More specifically, 145 of the men in group 1 developed further PSA elevations during the follow-up period, compared with 104 men in group 2 and 83 men in group 3. Similar trends were observed with respect to how many men developed metastases, or cancer that becomes resistant to hormonal therapy after it begins to spread.

The more intensive treatments also had more short-term side effects, especially diarrhea. But differences in side effects between the three groups disappeared after three months.

The authors emphasized that longer follow-up is still needed to confirm whether adding ADT and pelvic node radiation to PBRT actually lengthens survival. Moreover, the study did not evaluate a newer therapeutic strategy for biochemical relapse, where doctors use novel imaging methods to find exceedingly small metastases throughout the body that they treat directly with radiation.

Dr. Marc Garnick, the Gorman Brothers Professor of Medicine at Harvard Medical School and Beth Israel Deaconess Medical Center, and editor of the Harvard Health Publishing Annual Report on Prostate Diseases, says it’s important for men to understand that any measurable amount of PSA after a radical prostatectomy is abnormal and requires further evaluation. “The time-honored normal PSA range of 0 to 4 ng/mL no longer applies when men have had their prostates surgically removed,” he says. “Evidence of further benefits from adding ADT and pelvic radiation during this study is significant. Whether this represents a new standard of care in biochemical relapse requires additional follow-up.”

About the Author

photo of Charlie Schmidt

Charlie Schmidt, Editor, Harvard Medical School Annual Report on Prostate Diseases

Charlie Schmidt is an award-winning freelance science writer based in Portland, Maine. In addition to writing for Harvard Health Publishing, Charlie has written for Science magazine, the Journal of the National Cancer Institute, Environmental Health Perspectives, … See Full Bio View all posts by Charlie Schmidt

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Strong legs help power summer activities: Hiking, biking, swimming, and more

Older woman wearing black cycling clothes and a blue helmet riding a bicycle on a roadway with flowering trees bushes and tress lining the roadside

My favorite summer activities officially kick in when the calendar flips to May. It’s prime time for open water swimming, running, cycling, hiking, and anything else that gets me outside and moving. Yet, my first step is to get my legs in shape.

“Legs are the foundation for most activities,” says Vijay Daryanani, a physical therapist at Harvard-affiliated Spaulding Rehabilitation Hospital. “They’re home to some of the body’s largest muscles, and building healthy legs can improve one’s performance, reduce injury, and increase endurance.”

Four leg muscle groups to build for summer activities

Four muscles do the most leg work: quadriceps, gluteus maximus (glutes), hamstrings, and calves. Here is a look at each.

Quadriceps (quads). Also known as the thigh muscles, the quads are a group of four muscles (hence the prefix “quad’). They extend your leg at the knee and power every leg action: stand, walk, run, kick, and climb.

Glutes. The body’s largest muscles, the glutes (your buttock muscles) keep you upright and help the hips and thighs propel your body forward.

Hamstrings. The hamstrings are a group of three muscles that run along the back of your thighs from the hip to just below the knee. They allow you to extend your leg straight behind your body and support hip and knee movements.

Calves. Three muscles make up the calf, which sits in the back of the lower leg, beginning below the knee and extending to the ankle. They work together to move your foot and lower leg and push you forward when you walk or run.

Spotlight muscle strength and length

Strength and length are the most important focus for building summer-ready legs, says Daryanani. “Strengthening leg muscles increases power and endurance, and lengthening them improves flexibility to protect against injury.”

If you are new to exercise or returning to it after time off, first get your legs accustomed to daily movement. “Start simply by walking around your home nonstop for several minutes each day, or climbing up and down stairs,” says Daryanani.

After that, adopt a walking routine. Every day, walk at a moderate pace for 20 to 30 minutes. You can focus on covering a specific distance (like one or two miles) or taking a certain number of steps by tracking them on your smartphone or fitness tracker. You won’t just build leg strength — you’ll reap a wide range of health benefits.

There are many different leg muscle-building exercises, some focused on specific activities or sports. Below is a three-move routine that targets the four key leg muscles. Add them to your regular workout or do them as a leg-only routine several times a week. (If you have any mobility issues, especially knee or ankle problems, check with your doctor before starting.)

To help lengthen your leg muscles and increase flexibility, try this daily stretching routine that includes several lower-body stretches.

Dumbbell squats

Muscles worked: glutes and quads

Reps: 8-12

Sets: 1-2

Rest: 30-90 seconds between sets

Starting position: Stand with your feet apart. Hold a weight in each hand with your arms at your sides and palms facing inward.

Movement: Slowly bend your hips and knees, leaning forward no more than 45 degrees and lowering your buttocks down and back about eight inches. Pause. Slowly rise to an upright position.

Tips and techniques:

  • Don’t round or excessively arch your back

Make it easier: Do the move without holding weights.

Make it harder: Lower yourself at a normal pace. Hold briefly. Stand up quickly.

Reverse lunge

Muscles worked: quads, glutes, hamstrings

Reps: 8-12

Sets: 1-3

Rest: 30-90 seconds between sets

Starting position: Stand straight with your feet together and your arms at your sides, holding dumbbells.

Movement: Step back onto the ball of your left foot, bend your knees, and lower into a lunge. Your right knee should align over your right ankle, and your left knee should point toward (but not touch) the floor. Push off your left foot to stand and return to the starting position. Repeat, stepping back with your right foot to do the lunge on the opposite side. This is one rep.

Tips and techniques:

  • Keep your spine neutral when lowering into the lunge.
  • Don’t lean forward or back.
  • As you bend your knees, lower the back knee directly down toward the floor with the thigh perpendicular to the floor.

Make it easier: Do lunges without weights.

Make it harder: Step forward into the lunges, or use heavier weights.

Calf raises

Muscles worked: calves

Reps: 8-12

Sets: 1-2

Rest: 30 seconds between sets

Starting position: Stand with your feet flat on the floor. Hold on to the back of a chair for balance.

Movement: Raise yourself up on the balls of your feet as high as possible. Hold briefly, then lower yourself.

Make it easier: Lift your heels less high off the floor.

Make it harder: Do one-leg calf raises. Tuck one foot behind the other calf before rising on the ball of your foot; do sets for each leg. Or try doing calf raises without holding on to a chair.

About the Author

photo of Matthew Solan

Matthew Solan, Executive Editor, Harvard Men's Health Watch

Matthew Solan is the executive editor of Harvard Men’s Health Watch. He previously served as executive editor for UCLA Health’s Healthy Years and as a contributor to Duke Medicine’s Health News and Weill Cornell Medical College’s … See Full Bio View all posts by Matthew Solan

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Inflammatory bowel disease and family planning: What you need to know

photo of a pregnant person in an examination room speaking with a gynecologist, who is holding a tablet and showing it to the patient

Inflammatory bowel disease (IBD) is commonly diagnosed when people are in their 20s and 30s, which is also when many people are planning families. Many people who have been diagnosed with IBD (which includes Crohn’s disease and ulcerative colitis) have questions and concerns regarding their fertility, conception, pregnancy, delivery, and breastfeeding.

Thinking about conceiving a child or becoming pregnant?

It is important to make sure that your IBD is well controlled, ideally before you begin trying to have a biological child. This is equally important for patients with male and female reproductive anatomy.

Patients with female reproductive anatomy who conceive in remission tend to remain in remission throughout their pregnancy. Research shows that poorly controlled IBD can lead to decreased fertility, and pregnancy can be complicated by premature loss, preterm labor, low birthweight, and small for gestational age babies.

You may require blood work, imaging, or endoscopy prior to conception to get an idea of whether you have an actively inflamed bowel before pregnancy. Your doctor may also modify your medications to ensure that your disease is as well controlled as possible.

You will require care from different types of health care providers during pregnancy, in addition to a gastroenterologist with expertise in IBD. Depending on the history and severity of your IBD, you may benefit from having a high-risk maternal fetal OB/GYN, colorectal surgeon, pharmacist, IBD nurse, psychologist, or nutritionist as part of your care team.

What should I do before I start trying to conceive or become pregnant?

It is recommended to take a prenatal vitamin and/or folic acid supplement. Vitamin D deficiency is common in IBD, and if your levels are low your doctor may recommend supplementation. It is also important to be up to date on your vaccines and review your medication list with your doctor.

Will I need to change my treatment before conception or pregnancy?

Many IBD medications have favorable safety profiles during conception and pregnancy. However, there are some medications that may impact fertility (such as by decreasing sperm count) or that may be unsafe to continue during pregnancy. For example, it is generally recommended to stop taking the drug methotrexate three months before conception.

As newer drugs are developed, research about the safety of IBD treatments continues. It is important to discuss your medications and any concerns you may have during the pregnancy planning period.

How will I be monitored during pregnancy?

Your gastroenterologist will carefully monitor your symptoms during preconception, pregnancy, and postpartum. You may be asked to provide stool samples to assess fecal calprotectin levels (a marker of inflammation measured in the stool), which can help your doctor monitor IBD activity prior to conception and during each trimester of your pregnancy.

Drug levels of certain IBD medications may be monitored via blood work as well, to ensure proper medication dosing. Monitoring and managing IBD throughout pregnancy is individualized for each patient, and the goal is to increase the chances of a healthy outcome for both you and your baby.

What if I have an IBD flare while pregnant?

During an IBD flare in pregnancy, the goal is to rapidly decrease inflammation and optimize an IBD treatment regimen in order to avoid complications for you and your and baby. This may involve drug level monitoring, adjusting medication dosage, or switching medication types. A short course of steroid medications may be needed in certain cases.

If your blood work indicates iron deficiency anemia (which can be caused by inflammation in the GI tract, but can also occur in pregnancy due to increased iron requirement for the baby), iron supplements, either oral or intravenous, can be used to improve blood counts.

What are my options for delivery?

Most people with IBD can deliver via their preferred method. The decision to have a vaginal or cesarean section delivery sometimes depends on a patient’s medical history. If a patient has Crohn’s disease and active perianal disease, a cesarean section may be recommended. This is because active perianal disease increases the risk of severe tears and trauma to the perineal area (area around the anus and vagina).

Patients with a history of steroid exposure and bone complications (like osteoporosis) may want to avoiding pushing during a vaginal delivery. A cesarean section may also be recommended if there are significant risk factors for injury to the perineal area, or an obstetric complication unrelated to Crohn’s or ulcerative colitis.

What happens after I give birth?

After delivery, it’s important to continue IBD medications. Approximately one-third patients will have an IBD flare within a year following delivery. Patients with poorly controlled IBD during the third trimester or while in de-escalation of therapy (reduction in medications) during or after pregnancy are at the highest risk for a postpartum flare. For this reason, it is important to maintain close follow-up with your IBD doctor during this time.

Can I breastfeed/chestfeed?

Breastfeeding/chestfeeding has many benefits for both the postpartum person and infant. Many IBD treatments have favorable safety profiles for breastfeeding/chestfeeding. Some newer biologic medications have not yet been studied well. Your doctor will discuss the risks and benefits of your individualized IBD treatment to ensure your regimen and breastfeeding goals are both optimized.

Will my baby have IBD?

While there is a genetic component to IBD, there is usually a low risk of IBD for biologic children of IBD patients. First-degree relatives (and in particular, siblings) of people with IBD do have an increased risk of Crohn’s disease and ulcerative colitis.

The bottom line

It is important to discuss family planning goals with your doctors early, so they can help you optimize your health and focus on achieving remission prior to conception. Fortunately, many IBD medications are considered safe and effective during conception, pregnancy, and postpartum. During pregnancy, proactive monitoring and early treatment of flares is essential. Every pregnancy is different, and close communication with your medical team is important to keep you and your developing baby healthy.

About the Authors

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Loren Rabinowitz, MD, Contributor

Dr. Loren Rabinowitz is an instructor in medicine Beth Israel Deaconess Medical Center and Harvard Medical School, and an attending physician in the Inflammatory Bowel Disease Center at BIDMC. Her clinical research is focused on the … See Full Bio View all posts by Loren Rabinowitz, MD photo of Nisa Desai, MD

Nisa Desai, MD, Contributor

Dr. Nisa Desai is a practicing hospitalist physician at Beth Israel Deaconess Medical Center, and an instructor in medicine at Harvard Medical School. She completed undergraduate education at Northwestern University, followed by medical school at the … See Full Bio View all posts by Nisa Desai, MD

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Corneal transplants becoming more common

A cross section of an anatomical model of the eye against a black background; the clear plastic dome of the cornea shows on the left

At one time, replacement parts for the eyes must have seemed unimaginable. Nowadays, if the inner lens of the eye becomes clouded by a cataract, a routine surgery to swap it out with a new artificial lens restores vision.

But what happens if the outer lens of the eye (the cornea) becomes damaged or diseased? You can have that replaced, too. “It’s not as common as cataract surgery, but many people get corneal diseases after age 50 and may need a corneal transplant,” says Dr. Nandini Venkateswaran, a corneal and cataract surgeon at Harvard-affiliated Massachusetts Eye and Ear.

More than 49,000 corneal transplants occurred in 2021 in the US, according to the Eye Bank Association of America.

What is the cornea?

The cornea is a dome of clear tissue at the front of each eye, covering the iris and pupil, that acts as a windshield that protects the delicate eye apparatus behind it, and focuses light onto the retina, which sends signals that the brain turns into images (your vision).

You need this combo of windshield and camera lens to focus and see clearly. But many things can go wrong within the five layers of tissue that make up the cornea. That can make it hard to see and rob you of the ability to read, drive, work, and get through other activities in your day.

How does damage to the cornea occur?

It may stem from a number of causes:

  • Injuries, such as a fall. “Falls are a big reason for people to come in with acute eye trauma. The cornea can be damaged easily if something pokes it,” Dr. Venkateswaran says.
  • Previous eye surgeries. “Especially for adults who’ve had several eye surgeries — such as cataract and glaucoma surgeries — the inner layers of the cornea can become damaged and weakened with age,” she adds.
  • Illness. Problems like severe corneal infections, or genetic conditions such as Fuchs’ endothelial dystrophy, can cause vision loss.

What are the options for treating corneal damage?

Cornea treatment depends on the type of problem you have and the extent of the damage. “It’s a stepwise approach. Sometimes wearing a specialty contact lens or using medications can decrease swelling or scarring in the cornea,” Dr. Venkateswaran says.

When damage can’t be repaired, surgeons can replace one or a few layers of the cornea (a partial-thickness transplant), or the whole thing (a full-thickness transplant).

The vast majority of transplants come from donor corneas that are obtained and processed by eye banks throughout the US. In some instances, such as when repeated transplants fail, an artificial cornea is an option. Recovery after corneal surgery can take up to a year.

How long-lasting are corneal transplants?

There’s always a risk that your body will reject a corneal transplant. It happens about a third of the time for full-thickness transplants. It occurs less often for partial-thickness transplants. Preventing rejection requires a lifetime of eye drops.

Still, transplant longevity varies. “I’ve seen transplants from 50 or 60 years ago and now they’re starting to show wear and tear. Other patients, for a variety of reasons — immune system attacks, intolerance to eye drops, or underlying conditions — may only have a transplant for five to 10 years before they need another,” Dr. Venkateswaran explains.

Preventive eye care can help preserve the cornea

It’s crucial to get regular comprehensive eye exams to make sure your corneas and the rest of your eyes are healthy.

The American Academy of Ophthalmology recommends a comprehensive (dilated) eye exam

  • at age 40
  • every two to four years for people ages 40 to 54
  • every one to three years for people ages 55 to 64
  • every one to two years for people ages 65 and older.

You’ll need an eye exam more often if you have underlying conditions that increase your risk for eye disease, such as diabetes or a family history of corneal disease.

If you have any vision problems, such as eye pain, redness, blurred vision despite new glasses, or failing eyesight, see an eye doctor.

Fortunately, for people who do experience corneal damage, advances in surgical options are encouraging.

“Corneal transplants are a miracle,” Dr. Venkateswaran says. “I have patients whose quality of life was significantly decreased because they couldn’t see through their cloudy windshield. We can give them sight again, and we have the technology and medications to keep the transplant alive.”

About the Author

photo of Heidi Godman

Heidi Godman, Executive Editor, Harvard Health Letter

Heidi Godman is the executive editor of the Harvard Health Letter. Before coming to the Health Letter, she was an award-winning television news anchor and medical reporter for 25 years. Heidi was named a journalism fellow … See Full Bio View all posts by Heidi Godman

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Can an implanted tongue-stimulating device curb your sleep apnea?

Man asleep in bed, snoring, on his side; woman awake and looking at him with one hand cupped over her ear to block noise

Loud snoring, grunts, and gasps can be a sign of obstructive sleep apnea, a serious disorder that causes repeated, brief pauses in breathing (apneas) throughout the night. It can leave people drowsy and depressed, and put them at risk for high blood pressure, heart disease, and other health problems.

If this sounds like you or a bed partner, a recent spate of advertisements for a mask-free treatment for the disorder may catch your attention. Known medically as a hypoglossal nerve stimulator, the pacemaker-like device moves the tongue forward during sleep. That helps reopen a collapsed airway — the root cause of obstructive sleep apnea. But how does it compare with other treatments, and who might be a good candidate?

A second-choice therapy for sleep apnea

Marketed under the name Inspire, the device was approved by the FDA in 2014. It’s a second-choice therapy intended only for people who can’t tolerate positive airway pressure (known as PAP or CPAP), according to Dr. Rohit Budhiraja, a pulmonary and sleep specialist at Harvard-affiliated Brigham and Women’s Hospital.

“Sleep apnea causes the muscles in the back of the throat to collapse, which leads to pauses in breathing that wake you up again and again,” he says. PAP, the gold standard therapy for sleep apnea, prevents airway collapse by using a small bedside machine attached to tubing that blows air through a face mask.

This can improve a measurement called the apnea-hypoxia index (AHI) by approximately 90%, lowering it below 5 in most people. The AHI is a score that gauges the severity of sleep apnea. An AHI between 5 and 14 is considered mild; between 15 and 29 is moderate; 30 and higher is severe.

Targeting tongue muscles is less effective

Inspire targets only the muscles of the tongue rather than the entire airway, so it isn’t as effective as PAP. In fact, the company’s stated treatment goal is to lower a person’s AHI by just 50% (or below 20), although some people may do better.

Because PAP is more effective, sleep specialists encourage people to stick with it by trying different strategies. But research suggests a quarter to a third of people have a hard time using PAP (see here and here). When that’s the case, Inspire may be an alternative, says Dr. Budhiraja.

Who might consider hypoglossal nerve stimulation?

In addition to trying PAP without success, you also must

  • have moderate to severe sleep apnea (an AHI score of 15 to 65)
  • have a body mass index (BMI) of 32 or lower (although some centers allow BMI values as high as 35), which means the device is not right for people in some weight ranges.

If you meet these criteria, you can ask your doctor for a referral to a sleep specialist or an ear, nose, and throat surgeon. The next step is sleep endoscopy. While you are sedated, a doctor passes a small tube with a light and a tiny video camera on one end through a nostril to examine your upper airway. Up to a quarter of people have an airway collapse pattern that can’t be remedied with Inspire, Dr. Budhiraja notes. And, as noted, others have too high an AHI score to try it.

A surgical procedure requiring general anesthesia

The device is implanted during a short, same-day procedure done under general anesthesia. A generator is placed just below the collarbone, a breathing sensor at the side of the chest by the ribs, and a stimulation electrode around the hypoglossal nerve under the tongue.

As with all surgery, possible risks include bleeding and infection. Some people experience tongue weakness, which can cause slightly slurred speech and minor swallowing problems. But this usually resolves within a few days, or for most people, within a few weeks.

The device must be activated a month after surgery at a sleep laboratory. The breathing sensor monitors your breathing and, when necessary, it tells the generator to send a small electrical pulse to the electrode to make the tongue muscles contract. The stimulation moves your tongue forward so you can breathe normally.

How does it feel?

“Some people describe a mild tingling sensation, but most say the feeling is hard to describe,” says Dr. Budhiraja.

At home, you use a small remote control to turn the device on at night and off in the morning. The remote is set to gradually increase the level of stimulation once or twice a week as tolerated until you reach the highest level. You then return to the sleep lab for a study to determine your optimal range. The remote is then programmed to that range.

Some people start noticing a difference in their sleep quality even at the lowest levels of stimulation. Yearly checks are recommended thereafter, and the replaceable battery lasts about 11 years. Medicare and most major insurance plans cover Inspire.

Once it’s working, hypoglossal nerve stimulation is definitely convenient: no maintenance, cleaning, or buying supplies as required with a PAP machine. “But because Inspire is less effective, it’s not considered a replacement for PAP,” says Dr. Budhiraja.

About the Author

photo of Julie Corliss

Julie Corliss, Executive Editor, Harvard Heart Letter

Julie Corliss is the executive editor of the Harvard Heart Letter. Before working at Harvard, she was a medical writer and editor at HealthNews, a consumer newsletter affiliated with The New England Journal of Medicine. She … See Full Bio View all posts by Julie Corliss

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HEALTHY-FOOD THE-BEAUTY TRAINING

Recognizing and preventing sun allergies

photo of a woman with a sunburned face standing in woods and looking skyward, sun is peeking through trees and she is holding her hands at the sides of her face

No one is truly allergic to the sun, but some people are quite sensitive to different types of sun rays and may develop mild to serious reactions after spending time in the sun.

There are several types of “sun allergies,” but polymorphous light eruption (PMLE), an autoimmune condition in the skin that occurs after sun exposure, is one of the most common. Other conditions considered as sun allergies are solar urticaria (hives and reddish patches that usually start 30 minutes to two hours after the sun exposure), actinic prurigo (papules and nodules that are intensely itchy on sun-exposed skin areas), and photoallergic reaction (when the UV rays from the sun modify the chemical structure of medications or products applied to the skin, and a person develops an allergy to the newly modified substance).

What causes PMLE?

People who have PMLE have immune cells that are triggered by sun rays, which attack their skin, and they develop a skin reaction to the sun’s the ultraviolet (UV) rays.

PMLE represents 70% of all sun-induced skin eruptions. It can affect both sexes and all skin types, and it usually starts when someone is a teen or young adult. PMLE may be an inherited condition. Being a female, having fair skin, and living in the north are other risk factors.

PMLE is more common in young women who live in temperate climates. People who live in temperate climates spend all winter out of the sun, so when it becomes warmer the sun exposure is intense. People who live in warmer climates are desensitized because they have a higher sun exposure all year.

What does PMLE look like?

PMLE can appear several hours or days after the first major sunlight exposure of the season, usually during spring or at the beginning of summer. The areas of the body generally affected the most are the ones that are covered during wintertime, but not in the summer: the neck, the chest, and the outer parts of the arms.

After exposure to the sun, people with PMLE usually notice reddish patches on their skin. These spots may itch, burn, or sting, but they typically don’t leave a scar. In more severe cases, the patches cover most of the body and may also be associated with headaches, fevers, tiredness, and low blood pressure. (If you experience these symptoms, see an urgent care provider for evaluation.) If you think you have PMLE or another sun allergy, a dermatologist is the best doctor to evaluate and treat your skin condition.

Does PMLE get better?

PMLE lesions often get better in approximately 10 days, and it’s important to avoid sun exposure until you are healed. People who develop PMLE can experience significant discomfort and have their life negatively impacted during the spring and summer months. However, repetitive sun exposure can make PMLE less likely to occur. The hardening effect, as it is called, means that the skin lesions that appear after the first episode are less severe, and they can be better tolerated during subsequent episodes.

What are current treatments for any sun allergy, including PMLE?

The best treatment is to prevent sun exposure. Avoid sunlight when it is most intense (from 10 a.m. to 4 p.m.), and use UV-protecting clothing or clothes made of darker and thicker fabrics, as they will prevent the UV rays coming from the sun from reaching your skin. Hats with a wide brim protect your scalp, face, and (partially) the neck.

Broad-spectrum sunscreens that protect your skin from both UVA and UVB rays should be used daily, even if it’s cloudy. Apply sunscreen on your face and any part of your skin that is not covered by a hat or clothing. Reapply sunscreen every two hours, and if you go swimming or get sweaty reapply more frequently (water-resistant sunscreen should also be reapplied).

If you develop PMLE, the areas of skin impacted can be treated with steroid creams. In severe cases, your doctor may recommend a short course of steroid pills. Medications that reduce the immune response, such as azathioprine, are options for treating PMLE, since it is an autoimmune condition (the body is attacking it is own healthy cells).

Antihistamines are medications typically used for allergies that may help shorten the duration of reddish patches that itch or burn, and they also reduce inflammation.

Hydroxychloroquine (a medication also used to treat malaria) can be used in case of flare-ups, or as a prevention method when people travel to sunny locations during winter vacations.

Oral Polypodium leucotomos extract, a natural substance derived from tropical fern leaves, may work as a potent antioxidant, and has anti-inflammatory properties that are beneficial in the prevention of PMLE. Other nutritional supplements containing lycopene and beta-carotene (vitamin A derivatives) have a similar effect. A dermatologist will guide you on the best way to use these medications.

The bottom line

Sun allergies are common in temperate climates, but with a dermatologist’s guidance, vigilant sun prevention, and medications they can be managed throughout the sunny months of the year.

About the Authors

photo of Neera Nathan, MD, MSHS

Neera Nathan, MD, MSHS, Contributor

Dr. Neera Nathan is a dermatologist and researcher at Massachusetts General Hospital and Lahey Hospital and Medical Center. Her clinical and research interests include dermatologic surgery, cosmetic dermatology, and laser medicine. She is part of the … See Full Bio View all posts by Neera Nathan, MD, MSHS photo of Lais Lopes Almeida Gomes

Lais Lopes Almeida Gomes, Contributor

Dr. Lais Lopes Almeida Gomes is a dermatology research fellow at Massachusetts General Hospital, and a pediatric dermatologist in Brazil. Her clinical and research interests include atopic dermatitis and global health. She is part of the … See Full Bio View all posts by Lais Lopes Almeida Gomes

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HEALTHY-FOOD THE-BEAUTY TRAINING

Why are you taking a multivitamin?

For most Americans, a daily multivitamin is an unnecessary habit.

Multivitamins spilling upward out of a bottle against a dark background

Are you among the one in three Americans who gulps down a multivitamin every morning, probably with a sip of water? The truth about this popular habit may be hard to swallow.

“Most people would be better off just drinking a full glass of water and skipping the vitamin,” says Dr. Pieter Cohen, an associate professor of medicine at Harvard Medical School and an internist at Harvard-affiliated Cambridge Health Alliance. In addition to saving money, you’ll have the satisfaction of not succumbing to misleading marketing schemes.

That’s because for the average American adult, a daily multivitamin doesn’t provide any meaningful health benefit, as noted recently by the US Preventive Services Task Force (USPSTF). Their review, which analyzed 84 studies involving nearly 700,000 people, found little or no evidence that taking vitamin and mineral supplements helps prevent cancer and cardiovascular disease that can lead to heart attacks and stroke, nor do they help prevent an early death.

“We have good evidence that for the vast majority of people, taking multivitamins won’t help you,” says Dr. Cohen, an expert in dietary supplement research and regulation.

Who might need a multivitamin or individual supplements?

There are some exceptions, however. Highly restrictive diets and gastrointestinal conditions, or certain weight-loss surgeries that cause poor nutrient absorption, are examples of reasons why a multivitamin or individual vitamins might be recommended. A daily vitamin D supplement may be necessary when a person gets insufficient sun exposure. Your doctor may recommend an iron supplement if you have a low red blood cell count (anemia).

Why is it hard to give up the habit of a daily multivitamin?

Surveys suggest people take vitamins to stay healthy, feel more energetic, or gain peace of mind, according to an editorial that accompanied the USPSTF review. These beliefs stem from a powerful narrative about vitamins being healthy and natural that dates back nearly a century.

“This narrative appeals to many groups in our population, including people who are progressive vegetarians and also to conservatives who are suspicious about science and think that doctors are up to no good,” says Dr. Cohen.

Unproven marketing claims for dietary supplements

Vitamins are very inexpensive to make, so the companies can sink lots of money into advertising, says Dr. Cohen. But because the FDA regulates dietary supplements as food and not as prescription or over-the-counter drugs, the agency only monitors claims regarding the treatment of disease.

For example, supplement makers cannot say that their product “lowers heart disease risk.” But their labels are allowed to include phrases such as “promotes a healthy heart” or “supports immunity,” as well as vague promises about improving fatigue and low motivation.

“Supplement manufacturers are allowed to market their products as if they have benefits when no benefit actually exists. It’s enshrined into the law,” says Dr. Cohen. It’s wise to note the legally required disclaimer on each product: “These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.”

But even the strong language in this disclaimer — “not intended to diagnose, treat, cure, or prevent” — doesn’t seem to affect how people perceive the marketing claims.

Although multivitamins aren’t helpful, at least they’re not harmful. But the money people spend on them could be better spent on purchasing healthy foods, Dr. Cohen says.

About the Author

photo of Julie Corliss

Julie Corliss, Executive Editor, Harvard Heart Letter

Julie Corliss is the executive editor of the Harvard Heart Letter. Before working at Harvard, she was a medical writer and editor at HealthNews, a consumer newsletter affiliated with The New England Journal of Medicine. She … See Full Bio View all posts by Julie Corliss

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HEALTHY-FOOD THE-BEAUTY TRAINING

If cannabis becomes a problem: How to manage withdrawal

close-up photo of the hands of a young man rolling a joint

 

Proponents of cannabis generally dismiss the idea that there is a cannabis withdrawal syndrome. One routinely hears statements such as, “I smoked weed every day for 30 years and then just walked away from it without any problems. It’s not addictive.” Some cannabis researchers, on the other hand, describe serious withdrawal symptoms that can include aggression, anger, irritability, anxiety, insomnia, anorexia, depression, restlessness, headaches, vomiting, and abdominal pain. Given this long list of withdrawal symptoms, it’s a wonder that anyone tries to reduce or stop using cannabis. Why is there such a disconnect between researchers’ findings and the lived reality of cannabis users?

New research highlights the problems of withdrawal, but provides an incomplete picture

A recent meta-analysis published in JAMA cites the overall prevalence of cannabis withdrawal syndrome as 47% among “individuals with regular or dependent use of cannabinoids.” The authors of the study raise the alarm that “many professionals and members of the general public may not be aware of cannabis withdrawal, potentially leading to confusion about the benefits of cannabis to treat or self-medicate symptoms of anxiety or depressive disorders.” In other words, many patients using medical cannabis to “treat” their symptoms are merely caught up in a cycle of self-treating their cannabis withdrawal. Is it possible that almost half of cannabis consumers are actually experiencing a severe cannabis withdrawal syndrome — to the point that it is successfully masquerading as medicinal use of marijuana — and they don’t know it?

Unfortunately, the study in JAMA doesn’t seem particularly generalizable to actual cannabis users. This study is a meta-analysis: a study which includes many studies that are deemed similar enough to lump together, in order to increase the numerical power of the study and, ideally, the strength of the conclusions. The authors included studies that go all the way back to the mid-1990s — a time when cannabis was illegal in the US, different in potency, and when there was no choice or control over strains or cannabinoid compositions, as there is now. One of the studies in the meta-analysis included “cannabis-dependent inpatients” in a German psychiatric hospital in which 118 patients were being detoxified from cannabis. Another was from 1998 and is titled, “Patterns and correlates of cannabis dependence among long-term users in an Australian rural area.” It is not a great leap to surmise that Australians in the countryside smoking whatever marijuana was available to them illegally in 1998, or patients in a psychiatric hospital, might be substantively different from current American cannabis users.

Medical cannabis use is different from recreational use

Moreover, the JAMA study doesn’t distinguish between medical and recreational cannabis, which are actually quite different in their physiological and cognitive effects, as Harvard researcher Dr. Staci Gruber’s work tells us. Medical cannabis patients, under the guidance of a medical cannabis specialist, are buying legal, regulated cannabis from a licensed dispensary; it might be lower in THC (the psychoactive component that gives you the high) and higher in CBD (a nonintoxicating, more medicinal component), and the cannabis they end up using often results in them ingesting a lower dose of THC.

Cannabis withdrawal symptoms are real

All of this is not to say that there is no such thing as a cannabis withdrawal syndrome. It isn’t life-threatening or medically dangerous, but it certainly does exist. It makes absolute sense that there would be a withdrawal syndrome because, as is the case with many other medicines, if you use cannabis every day, the natural receptors by which cannabis works on the body “down-regulate,” or thin out, in response to chronic external stimulation. When the external chemical is withdrawn after prolonged use, the body is left in the lurch, and forced to rely on natural stores of these chemicals, but it takes time for the natural receptors to grow back to their baseline levels. In the meantime, the brain and the body are hungry for these chemicals, and the result is withdrawal symptoms.

Getting support for withdrawal symptoms

Uncomfortable withdrawal symptoms can prevent people who are dependent on or addicted to cannabis from remaining abstinent. The commonly used treatments for cannabis withdrawal are either cognitive behavioral therapy or medication therapy, neither of which has been shown to be particularly effective. Common medications that have been used are dronabinol (which is synthetic THC); nabiximols (which is cannabis in a mucosal spray, so you aren’t actually treating the withdrawal); gabapentin for anxiety (which has a host of side effects); and zolpidem for the sleep disturbance (which also has a list of side effects). Some researchers are looking at CBD, the nonintoxicating component of cannabis, as a treatment for cannabis withdrawal.

Some people get into serious trouble with cannabis, and use it addictively to avoid reality. Others depend on it to an unhealthy degree. Again, the number of people who become addicted or dependent is somewhere between the 0% that cannabis advocates believe and the 100% that cannabis opponents cite. We don’t know the actual number, because the definitions and studies have been plagued with a lack of real-world relevance that many studies about cannabis suffer from, and because the nature of both cannabis use and cannabis itself have been changing rapidly.

How do you know if your cannabis use is a problem?

The standard definition of cannabis use disorder is based on having at least two of 11 criteria, such as: taking more than was intended, spending a lot of time using it, craving it, having problems because of it, using it in high-risk situations, getting into trouble because of it, and having tolerance or withdrawal from discontinuation. As cannabis becomes legalized and more widely accepted, and as we understand that you can be tolerant and have physical or psychological withdrawal from many medicines without necessarily being addicted to them (such as opiates, benzodiazepines, and some antidepressants), I think this definition seems obsolete and overly inclusive.

For example, if one substituted “coffee” for “cannabis,” many of the 160 million Americans who guzzle coffee on a daily basis would have “caffeine use disorder,” as evidenced by the heartburn and insomnia that I see every day as a primary care doctor. Many of the patients that psychiatrists label as having cannabis use disorder believe that they are fruitfully using cannabis to treat their medical conditions — without problems — and recoil at being labeled as having a disorder in the first place. This is perhaps a good indication that the definition doesn’t fit the disease.

Perhaps a simpler, more colloquial definition of cannabis addiction would be more helpful in assessing your use of cannabis: persistent use despite negative consequences. If your cannabis use is harming your health, disrupting your relationships, or interfering with your job performance, it is likely time to quit or cut down drastically, and consult your doctor. As part of this process, you may need to get support or treatment if you experience uncomfortable withdrawal symptoms, which may make it significantly harder to stop using.

About the Author

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Peter Grinspoon, MD, Contributor

Dr. Peter Grinspoon is a primary care physician, educator, and cannabis specialist at Massachusetts General Hospital; an instructor at Harvard Medical School; and a certified health and wellness coach. He is the author of the forthcoming book Seeing … See Full Bio View all posts by Peter Grinspoon, MD