The course of ankylosing spondylitis (AS) can be unpredictable, and people living with AS commonly switch treatments over time. If you and your rheumatologist determine it may be time to switch AS treatments, there are important factors to consider before making a change.
Take time to learn what to expect with a new treatment plan, and talk to your rheumatologist about any questions or concerns.
AS is a type of axial spondyloarthritis (axSpA), an inflammatory arthritis that causes lower back pain and stiffness, neck pain, fatigue, and the fusion of bones in the lower back and pelvis.
Along with physical therapy and appropriate exercise, treatment of AS can involve a number of medications, including:
People with AS may decide to switch medication for one of the following reasons:
Here are five things to consider carefully if you are thinking about switching treatments.
Unlike NSAIDs or corticosteroids, which may provide quick relief for symptoms such as pain, swelling, and stiffness for some people with ankylosing spondylitis, DMARDs can take longer to start working. With some drugs, it’s important to be patient and have a clear understanding of when you may start getting relief from symptoms.
Long-term use of steroids is not usually recommended. If NSAIDs are no longer effective in treating your AS symptoms, your doctor may recommend using a conventional DMARD, biologic DMARD, or JAK inhibitor.
If conventional DMARDs such as methotrexate or sulfasalazine are suggested, it can take up to three months to feel the full benefits of the drug.
Biologic drugs vary in the point at which they are fully effective. Some people report feeling better with their first treatment, but this class of drug often takes a few months to relieve symptoms of AS.
JAK Inhibitors may start working within a few weeks but usually take three to six months to reach their full potential. In general, expect to try any medication for about three months before moving on to another.
If a particular biologic or JAK inhibitor medication is recommended for you, talk with your doctor about when you may notice that it’s starting to work. This will help ensure that your expectations are realistic.
Ankylosing spondylitis treatments are given in one of three ways:
Biologic drugs must be injected. Depending on which treatment options your rheumatologist recommends, you may have some choice in how you take your medication. With some drugs, you may need to schedule appointments for clinical IV infusions, which will require travel and time. IV drugs may be taken less often, however. With other biologic drugs, you may have the choice between self-injection or in-clinic injection.
Tumor necrosis factor alpha (TNF-alpha) inhibitors, which block specific inflammatory proteins in the immune system, are a class of biologic therapy that is usually used first for AS when switching to biologics. TNF-alpha inhibitors include:
Some TNF inhibitors are taken by self-injection, depending on the dose. Others are given as IV infusions.
If TNF inhibitors do not work for you, your doctor may suggest switching to another type of biologic called an interleukin inhibitor, such as secukinumab (Cosentyx), ixekizumab (Taltz), or ustekinumab (Stelara). The drugs are primarily taken by self-injection.
The JAK inhibitors tofacitinib (Xeljanz) and upadacitinib (Rinvoq) are taken orally as tablets every day. If you switch to a JAK inhibitor, it’ll be necessary to set reminders, use pill organizers, or find other ways to remember to take your medication without fail.
Not every treatment option will be flexible. But given the choice, some people may prefer the convenience of self-injection at home, while others might want a higher-dose infusion in a clinical setting if that means less-frequent treatments. These are details you can discuss with your health care team.
You will also need to know how a particular medication will affect your daily life in terms of treatment scheduling, dosage, and any need to time it around meals. Setting reminders on your phone or keeping a treatment calendar are important steps for managing medication schedules around other activities. Ask your doctor or nurse for tips on how to stick to a new treatment plan.
Side effects can occur with any drug, even over-the-counter treatments. Every AS medication has a risk of side effects, many of which are mild. Your doctor will explain rare but serious side effects. It’s important to thoroughly discuss potential side effects of a new treatment with your rheumatologist and learn how side effects can best be managed.
Methotrexate is usually tolerated well, but it has a risk of serious side effects that should be reported to your doctor. Bleeding, bruising, rashes, severe fatigue, fever, dry cough, or shortness of breath can be a sign lung damage, kidney damage, liver damage, or serious infection.
Sulfasalazine is also well tolerated by most people but brings a risk of:
These and other serious side effects should be reported to your doctor.
Common side effects of injected or infused biologics include temporary soreness at the site of injection or short-lived flu-like symptoms. Because biologic medications suppress the immune system, there is also a risk of infection.
Tell your doctor right away if you experience unexpected side effects from a biologic drug. Seek help immediately if you experience these or other signs of infection or another serious complication:
JAK inhibitors, which are taken orally, can cause nausea, diarrhea, headaches, high cholesterol, and upper respiratory infection. Rare but more serious side effects include kidney and liver problems, abnormal blood counts, and infection.
Talk to your rheumatologist about your individual risk of side effects. Your doctor will monitor you for serious side effects and can advise you on which treatment options are most likely to help you reach your goals for therapy.
Newer DMARDs for AS may have high out-of-pocket costs, depending on your health insurance. Although the high cost of a drug could make some people want to switch treatments, one study showed that people with AS who changed their biologic medicine or discontinued its use during the first year of treatment had higher health care costs than those who did not switch treatments.
Nonetheless, you may be tempted to switch from a costly treatment to something more affordable. Before you switch medications for financial reasons, be sure you have explored financial assistance programs that can help eligible people with AS reduce medication costs. Many drug companies have programs that help with the cost of drugs, insurance copays, and other expenses related to health care.
Nonprofit organizations also provide cost assistance for people who meet specific low-income requirements. Talk to your health care provider about working with a social worker or nurse navigator to help you find financial resources that you may be eligible for.
Switching AS treatments can be an emotionally stressful experience. Stay in touch with your health care team, and reach out if you have any concerns about your medication or condition. Let family and friends know how they can support you.
Social networks like MySpondylitisTeam can provide a supportive community of people who understand what you are going through. MySpondylitisTeam members often share their experiences — both challenges and achievements — with switching treatments.
One member wrote, “I’ve been on my new treatment for four months. Some good improvements but little improvement in the pain in my feet, left elbow, and sternoclavicular joint. My rheumatologist is wanting me to give it a full six months before considering a switch to something else. I am hoping to have much more improvement by the six-month mark so I don’t have to change. Sleep is difficult. I’m trying to stay active as much as possible.”
Another member wrote, “I went to the rheumatologist on Monday and had a medication switch — off a traditional DMARD and on to weekly injections. So far so good. I am quite proud of myself for managing my own injections.”
It’s important to openly discuss your treatment goals with your doctor. Medications have evolved significantly in recent years, with better options for treating AS. New advanced treatments are becoming available, and researchers continue to develop new therapies for AS. If you aren’t happy with your treatment plan, talk to your doctor about switching to another treatment option.
On MySpondylitisTeam, the social network for people with spondyloarthritis and their loved ones, more than 90,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondyloarthritis.
What else should people with AS know before switching treatments? Do you have any tips for others who might be changing medications? Share your advice in the comments below, or start a conversation by posting on your Activities page.