Looking for a quick intro to the world of steroids? Here’s our pick of 9 “need to knows” from across Sam.
1. Take your steroids early in the day
If you remember just one tip from Sam, let it be this: take your steroids with a little food as soon as you wake up to give yourself the best possible chance of a good night’s sleep. Taken in this way, the psychoactive (brain-altering) effects of your steroids will be at their lowest when you’re trying to relax at the end of your day.
“You can’t just stop taking steroids. Even if your side effects become challenging, you’ll need to reduce your dosage gradually.”
2. Plan to taper (reduce your steroids slowly)
It might feel odd to ask your doctor about tapering as soon as you start steroids but it’s an important conversation to have as early as day one. That’s because the longer you take steroids, the more likely you are to experience serious side effects. But - and here’s the crucial part - you can’t just stop taking steroids. Even if your side effects become challenging, you’ll need to reduce your steroid dosage gradually, in close consultation with your doctor.
All this happens most smoothly if you and your doctor talk openly about the balance between managing the symptoms of your condition and the side effects of your medication, and make a proactive plan to taper, right from the start.
3. Take extra care to avoid infections
Steroids dampen the body’s immune response. While this makes them useful for treating autoimmune conditions, it can also mean less protection from external threats, putting you at greater risk of infection.
This can include “opportunistic” infections where an infection is caused by an organism that doesn’t usually cause a problem in a patient with a healthy immune system.
It’s a good idea to talk to your doctor about immunizations, vaccinations and preventative antibiotics that can help keep you safe. You can also protect yourself by washing your hands regularly, covering minor grazes and wearing gloves when doing activities like gardening.
4. Measure the health of your eyes, bones and blood regularly
Too often, steroid-treated patients find out about the importance of monitoring their vision, bone density, blood pressure and blood sugar levels after they have started to cause serious, and even permanent, health problems. Arm yourself with information from Sam and talk to your doctor about scheduling regular checks on the following:
Eyes
Steroids can increase the risk of cataracts (clouding of the eyes) and glaucoma (increased eye pressure which can lead to optic nerve damage). Symptoms can be extremely subtle at first so be sure to get your eye pressure and sight checked regularly.
Bones
Steroids can decrease bone density and increase your risk of fractures. Most patients should have a baseline bone mineral density (DEXA) scan at the start of their steroid treatment and then every year afterwards. If you’re over 39 you can also ask your doctor about using an online tool called FRAX® to estimate your fracture risk and then take the necessary steps to protect yourself.
Blood pressure
Steroids can cause or worsen hypertension (high blood pressure). Keep yourself safe by checking your blood pressure regularly at home with a reliable monitor and sharing the readings with your doctor. They may adjust your steroid dose or prescribe blood pressure medications.
Blood sugar
Steroids can complicate the way your body controls its blood sugar levels, raise blood sugar and even cause diabetes if left unchecked. Put yourself on the front foot by asking your doctor about blood sugar testing. This often includes having a regular hemoglobin A1c (HbA1c) test to show your average blood sugar levels over the past few months.
Learn more about looking after your eyes and bones and regulating your blood pressure and blood sugar.
5. Prepare ahead of time for doctors appointments
Most healthcare appointments are booked for just 10-15 minutes, which is not long when you need to discuss your condition as well as update your doctor on your steroid side effects and discuss your blood pressure, sugar levels, eye and bone health!
You can take pressure off the actual appointment by preparing what you want to say and show in advance. This is even more important if you wake up on the day feeling poorly or with a bad case of brain fog.
6. Give friends, family and colleagues a heads-up
Sadly, it’s incredibly common for people who take steroids to experience low energy, depression and mood swings. In addition to making daily tasks seem harder to deal with, these changes can also impact the people around us.
It might be worth letting friends, family and colleagues know that you’ve started a medication that could affect your energy levels and mood. Being prepared that cross words could be “the steroids talking” may stop them from taking things too personally.
7. Never change your steroid use without your doctor’s advice
Even if you’re really struggling with steroid side effects you should not change your dose without speaking with your doctor. Steroid reduction can cause significant withdrawal symptoms. Stay safe and make sure the process is carefully managed as part of a planned taper (reduction).
8. Eat well, move often
“Healthy living” messages are so common that it can be tempting to zone out when we hear them, assuming it will be too difficult to change our ways, or that they’re for social-media-influencer-types, who lead very different lives from us! But whatever your shape, size and schedule, it’s important to know that steroids change the way your appetite, digestive system and muscles work, making it genuinely harder for you to stay healthy. Factoring this in when planning your daily meals and activities is doing yourself a great kindness.
You could start with your shopping list. Aim for a good mix of fruit, vegetables, whole grains (like brown rice and oats) and lean proteins (like chicken, white fish, beans, natural yogurt, and nuts).
As for exercise, for many, the trick here is to start small. Just five minutes of daily stretching or a regular lunchtime stroll can start to make other types of exercise feel more accessible.
It’s hard to change long-established habits, so don’t give yourself a hard time if you don’t always make the best choices. Take a deep breath, remember this is about being kind to yourself, and commit to trying again tomorrow.
9. Knowledge is power
Learning more about steroids won’t stop them from causing side effects but it can help you feel a bit more in control. Your doctor is the best source of information for your particular steroid prescription but with regular use, Sam can be a powerful ally too! We’ve done our best to ensure that Sam puts everything you need in one place, with tools to track your journey and make it easier to discuss with your doctor at your next appointment.
And don’t forget, on days when motivation is low, the small act of logging your mood or side effects allows us to build an anonymized picture of steroid patient experience that helps us support all Sam users. So you’re not just helping yourself and your doctor, you’re helping others too.