When Modulator Therapy Causes Weight Gain
I recognize that weight is just one measure of overall health, but it is one that many of my clients are concerned with. If you have CF and you’re on Trikafta, you may have noticed that you’ve gained weight for the first time in your life! While this is a huge blessing in some ways (being able to gain weight means your body is functioning more efficiently and it’s absorbing nutrients), it can lead to more weight gain than is comfortable or healthy for you, Gaining too much weight can then contribute to the typical health complications people without CF experience when they become overweight or obese.
Overweight and obesity are so common today that two-thirds of adults and one-third of children experience these in the United States right now. That’s hundreds of millions of people, so it is a common struggle. Overweight and obesity can increase the risk of many health problems like type 2 diabetes, heart disease, and some cancers. Achieving a healthy weight, eating nutritious foods, and being physically active can help improve your health and reduce these risks.
A 2019 report indicated that 23.1% of the CF population was overweight and 8.3% was obese, compared to just 12.8% of obese or overweight CF patients in 1999.
So, you want to be healthier, but you don’t want to trade in one set of disease symptoms for another, but what can you do if you are gaining too much weight? Well, there is a lot more to the old adage: “eat less, move more.”
Weight loss is very challenging for many reasons:
● There is an abundance of food available around most of us 24/7
● Eating isn’t just something we do for sustenance; it’s gratification, a social activity, and sometimes even a reward or something we do to soothe our emotions
● Computers and cars, etc. have contributed to a much more sedentary lifestyle—we don’t all need to be physically active farmers to survive anymore
● Reducing calories voluntarily is really, really hard; it’s a huge challenge to change habits
● Many diets work in the short term, but fail later on because they’re simply unsustainable and, having CF, you’ve probably never had to be on a “diet” in your life
● After losing weight, maintaining weight loss is extremely difficult [(and this is particularly true for women after menopause)]
Let’s look at some strategies to overcome the challenges of weight loss.
What is metabolism and how can I lose weight while taking CFTR modulators
Your weight is based on several factors, some are controllable and others are not. For example, your genetics, family history, and hormones can impact your weight, but there’s not too much you can do to significantly change those. On the other hand, how much and what you eat, the medications you’re taking, the amount of stress you’re under, and how much sleep and physical activity you get also contribute to weight, and are a bit more controllable (although your medical team dictates your medications, so that piece may not be completely controllable).
Here’s where metabolism fits with weight. There are so many things that your body does at rest: breathing, pumping blood, adjusting hormone levels, maintaining your body temperature, and growing and repairing cells. The amount of energy (calories) your body uses to perform these essential functions is called your “basal metabolic rate.” Overall, your basal metabolic rate (BMR), or metabolism, accounts for about two-thirds of the calories your body burns each and every day. When you have CF, you likely burn even more than the average person just to breathe.
“Metabolism is the process by which your body converts what you eat and drink into energy. During this complex process, calories in food and beverages are combined with oxygen to release the energy your body needs to function,” according to the Mayo Clinic.
Your metabolism is influenced mostly by your body size and composition. This means that people who are bigger and/or have heavier bones and more muscle mass burn more calories at rest. Because men tend to be bigger and have more muscle, they naturally tend to have a higher metabolism than women. This also goes for younger people. Because bone and muscle mass naturally tend to decrease (and fat mass naturally tends to increase) with age, if you don’t take steps to maintain bone and muscle mass, your metabolism likely will decrease which results in increased weight.
A slow metabolism may be one factor that influences your weight, but it’s not the only one. How your body processes what you eat or drink and how active you are also play roles in your weight. The process of digesting food burns calories. About 10 percent of the calories in carbohydrates and protein are used to digest them. Plus, the amount of physical activity you do also accounts for some of the calories you burn every day.
While some people may gain or lose weight easier than others, in general, the balance of your “energy equation” counts for your weight. That is, the amount of energy (calories) you take in minus the amount of energy (calories) you burn can determine whether you gain or lose weight.
Weight loss/maintenance strategies for CFTR modulator users
If you believe you are overweight, speak to your medical team before you start on any weight-loss program. Many weight-loss products or programs can be harmful depending on your current state of health and goals. Be particularly wary of products or programs that promise quick, long-lasting, or effortless weight loss.
Your behaviors and habits have a HUGE influence on your weight and you are empowered to adjust them as you see fit. In general, for non-CF individuals, it’s recommended that if you are overweight or obese and want to lose weight, you can start by cutting 500 calories per day from what you eat. And, if you can add in some of these other strategies (including adding physical activity) you may be able to reach your weight-loss goals even faster.
Here are my top six strategies for weight loss/maintenance:
1 - Set specific, realistic, forgiving goals. Be kind to yourself and embrace what CFTR therapy is doing for your body that is good!
● Instead of a goal to “lose weight,” try smaller and more specific goals that you can attain (such as losing one pound per week)
● Daily or weekly goals can be, for example, to cook a vegetable-rich meal on the weekend, decrease food cues (hiding cookies out of sight or disregarding food ads), or walk at least 30 minutes a day for at least 5 days a week.
● Try to stick with a new habit for at least a week or two to start making it routine. Then when one habit becomes consistent, add another one.
● Remember, it’s not uncommon to take 6 months to lose 5% of your body weight, so that may be a more realistic goal to aim for.
2 - Ditch the “diet” mentality and focus on making lasting improvements for sustainable health
● Focus on improving your food choices for overall health, rather than “dieting” for weight loss.
● Enjoy lots of fruits, vegetables, and lean proteins.
● Replace saturated and trans fats with healthier choices such as olive oil, nut butters, avocadoes.
3 - Try eating a different way and see what works for you
● Ideally, each meal should take at least 20 minutes to eat, so eat slower. Enjoy your food more and listen for fullness cues that subtly signal when you’re getting satisfied and it’s time to stop eating.
● Eat more mindfully by focusing on and enjoying what you’re eating while you’re eating it. Pay attention to your food’s smell, taste, and texture as you’re eating it.
● Try putting your fork down or sipping water between bites and thoroughly chewing before swallowing.
● If you have a habit of snacking in front of the TV or computer screen, try getting used to replacing that with a glass of water or unsweetened beverage instead.
4 - You don’t have to do exercise to be more physically active (but you can)
● Boost your activity; move for at least 30 minutes per day as your health allows (even three 10 minute sessions can help); more movement can bring greater benefits.
● Aerobic activity (e.g., walking, bicycling, etc.) is the most efficient way to burn calories.
● Weight training (e.g., using weights or pushing your body against gravity) builds your muscles which increases your metabolic rate; ideally you’d include at least two weight training sessions per week.
● Don’t forget you don’t have to do “exercise” to be physically active, you can take the stairs more often, park further away, walk a bit faster, or do housework or gardening—they all count toward your physical activity.
● Remember that any physical activity is better for your health (and weight loss goals) than none.
5 - Reward your successes
● According to the National Institutes of Health, “frequent small rewards, earned for meeting smaller goals, are more effective than bigger rewards that require a long, difficult effort.”
● Each time you reach a goal, however small, reward your success with a non-food activity or item.
● For example, you may want to buy yourself that book, movie, music, or game that you’ve wanted for a while. Or re-read, re-watch, or re-listen to an old favorite.
● Perhaps you can put a small amount of money away to save up for a larger reward.
● Rewards don’t have to be monetary. You can take some time for yourself like have a bath, do your nails, or enjoy a craft or hobby you love (or try a new one).
● Maybe you’d prefer some time to watch comedy skits or funny animal videos online.
6 - Persevere
● Losing weight is very hard and most people have to keep trying before they find a way that works for them.
● Every day is a new day. If you go off track, get back on track and try again.
● Don’t give up. A study published in September 2020 found that trying to lose weight over and over again.
In my work as a Certified Holistic Health Coach, I serve as your personalized nutrition coach, meal planning mentor and accountability partner. I would love to meet you for a FREE SESSION to chat about how I can support you or someone you love to make healthy eating and healthy weight happen.
The Bottom Line
To sum it all up, while weight is just one measure of health, it is a big concern for many people, and now excess weight gain may become more of a concern for those with CF as modulator use expands.
The fundamentals of weight loss include enjoying healthier, nutritious foods more often and being more physically active, but there are so many approaches that help you make this happen for you. The way you approach dieting and eating, the way you set your goals and reward yourself, and the way you persevere are all totally customizable so you can try and see what works for you. That’s why I want to offer you a free session with me to talk about how to personalize a plan that will work for the unique and wonderful you!
References
Harvard Health. (2018, May). Burning calories without exercise. https://www.health.harvard.edu/staying-healthy/burning-calories-without-exercise
Harvard Health. (2018, July). Small tricks to help you shed pounds and keep them off. Retrieved from https://www.health.harvard.edu/staying-healthy/small-tricks-to-help-you-shed-pounds-and-keep-them-off
Harvard Health. (2019, March 19). The lowdown on thyroid slowdown. Retrieved from https://www.health.harvard.edu/diseases-and-conditions/the-lowdown-on-thyroid-slowdown
Harvard Health. (2019, November 20). Building simple habits for healthy weight loss. Retrieved from https://www.health.harvard.edu/staying-healthy/building-simple-habits-for-healthy-weight-loss
CF News Today- Trikafta Increases Risk of Obesity-Related Health Problems
https://cysticfibrosisnewstoday.com/2021/11/05/nacfc2021-trikafta-increases-risk-obesity-related-health-problems/