By Stella Bard, MD, as told to Kara Mayer Robinson
I’ve been treating people who have ankylosing spondylitis (AS) for over 15 years in my private, community-based practice. I’ve gained many insights along the way about how to manage the challenges of this condition.
It can take a toll on your quality of life.
AS is a chronic condition that can be disabling, which is often frustrating and depressing. It can really decrease your quality of life and work productivity. Most of the people I see have difficulty just getting out of bed and can feel stiff even with short periods of inactivity. It’s sometimes accompanied with disabling fatigue.
Also, because they’re symptomatic when they’re not moving, their sleep is affected, and this may lead to a condition known as fibromyalgia. This is a condition that results from poor or non-restorative sleep and leads to all-over body aching and constant fatigue, brain fog, difficulty concentrating, and memory problems.
AS often happens in young people. Those I treat tend to be frustrated because their same-age counterparts are able to do whatever they please, without difficulty, like work, hobbies, and chores, while those with AS have to take breaks and limit themselves. They have to stretch daily, for the rest of their life, to feel less stiff and to stay mobile.
You have tools to help you manage it better.
I always show the people I treat that there are many tools they can use to manage life with AS.
I always acknowledge the difficulty of living with this chronic condition, but at the same time provide support and accessibility when necessary. I encourage them and give them hope by explaining that we have an array of powerful drugs that will make them feel as good as they did before they had AS.
At their first visit, I give them direct ways to contact me at any time with any concerns they might have, as a way to support them at every step.
I like to give them a home exercise program specifically geared for AS. On top of that, I may also refer them to a physical therapist that is knowledgeable about AS.
It’s important to stay on your medications, even when you feel good.
One of the challenges I have when treating people for ankylosing spondylitis is non-compliance, or not continuing to take their medication. It can be a difficult challenge. We work together to find a solution that helps them keep up with their treatment.
Sometimes they tend to feel so good on the medications that they stop taking them and then they flare badly. I do my best to encourage them to continue with their treatment.
For those who take injections, sometimes they stop because they get tired of self-injecting. So I offer to inject them at the office. Now those who are eligible can take a tablet every day instead of an injection, so this may be another viable option.
Sometimes those I treat for AS might hesitate to tell me their treatment failed or say that they stopped taking their medication. This is a challenge, but it can be solved with open communication.
I encourage an honest and open rapport, so that they feel comfortable to tell me the truth, knowing I won’t be upset about it. I often explain to them that since I didn’t design the drug, it’s not a personal matter that I will take to heart.
Once we’ve talked about things openly, we can move forward and find a solution together.
The next step is to move on to another treatment option, perhaps one that has a different mechanism of action that might work for their unique inflammatory process.
Even the biggest challenges can be overcome.
The most difficult challenge I had when treating ankylosing spondylitis was when I worked with a young person who was diagnosed 10 years prior, in Bangladesh, but was not treated at that time.
I prescribed Humira (adalimumab). While he was on treatment, he contracted active tuberculosis from a roommate who recently arrived from Asia.
He was in my office for an evaluation and was coughing so hard and was so sick that I had to call EMS. This was one of only two times in my career where I had to rush someone to the hospital. I was afraid he wouldn’t survive this deadly infection.
He spent 9 months in the hospital and had to relearn to walk. At the age of 30, he was discharged from the hospital with a walker.
With continued careful care, he was able to survive and thrive. He’s now married and working without a single complaint. He’s checked on every few months. It always brings a warm feeling to my heart to see him walk through my door.
Work together with your doctor to get the best possible care.
If you’re living with ankylosing spondylitis, there are many things you can do to feel better.
- Take the medications your doctor prescribed, on time, when they are due.
- Let your doctor know then you feel like your treatment is no longer working or effective at relieving your symptoms.
- Don’t be afraid to tell your doctor if the treatments aren’t effective after you start them.
- Don’t compare yourself to others.
- Be kind to yourself.
- Give yourself breaks.
- Pace yourself.