Biologic drugs used to treat HS can be safely and conveniently self-injected at home, but some people are afraid to try this method. Many myHSteam members have shared their self-injection experiences, as well as their fears.
“I hate needles,” one myHSteam member wrote. Another said, “I’ve heard great things about biologics. If it works for me, then I’m braving the needles for sure.”
When appropriate, self-injection is a popular alternative to clinically administered injections. If you’re afraid of giving yourself an injection, think about how it can cut down on doctor visits and offer more self-sufficiency with your treatment. Once people get over the fear, many prefer the flexibility and comfort of self-injection.
Knowing what to expect can help overcome your fears. Here’s what to know so you can be prepared to face your self-injections with confidence.
Biologic drugs are used to treat autoimmune diseases and inflammatory conditions. Biologic therapy neutralizes the overactive immune response that creates the inflammation that causes the painful bumps (nodules, cysts, or lesions) of HS. Biologics can also decrease HS symptoms like discharge, inflammation, and swelling.
Adalimumab (Humira) is the only biologic currently approved by the U.S. Food and Drug Administration (FDA) to treat HS. However, two other biologics — ustekinumab (Stelara) and infliximab (Remicade) — are sometimes prescribed off-label for HS.
Biologics aren’t usually a first-line HS treatment. Biologic therapy is typically prescribed for chronic, stage 2 (moderate) HS that hasn’t responded to other treatments (such as topical steroids and disease-modifying drugs like methotrexate) and stage 3 (severe) HS. Fortunately, just 4 percent of people with HS progress to stage 3. Early diagnosis and prompt treatment of HS can yield better treatment outcomes.
Currently, biologics can only be administered intravenously (infusion) or by injection because they consist of large molecules that cannot be properly absorbed in the gastrointestinal tract if taken orally. There are three main types of self-injection devices for self-administering biologic drugs. They each have their advantages and disadvantages, depending on your preference. Talk to your doctor about the option you feel most comfortable using to make self-injection less scary.
A prefilled syringe is a syringe and needle that has been filled with the appropriate dose of a medication. The dose is administered manually, and the user can control the speed of the injection. However, self-injection with a prefilled syringe can be difficult for people with HS who have limited function with their hands.
A self-injection pen, also called an auto-injector, is prefilled with medication. It has a hidden spring-loaded needle, which is released by pressing a button when the device is pressed against the skin. Self-injection pens are easier to use for some people, but they may cause more swelling, bruising, or pain than a slower injection with a standard syringe.
E-devices are reusable auto-injectors that have enhanced technology with more functionality than injection pens. E-devices can provide control over the speed of injection, save an injection log, and have skin sensors that stop injection if contact with the skin is incorrect. However, some people might find e-devices too complicated.
Self-injecting isn’t preferred for all HS medications or all people prescribed them. Talk to your dermatologist to see if biologics and self-injection are options for you. There are some benefits to self-injecting your biologics rather than getting them at the doctor’s office, including:
If your fear of injections is responsible for a missed dose, missed appointment, or a missed test, it may pose a risk to your health.
People with a deep fear of injections are more likely to refuse or delay necessary health care interventions. This can include consistently taking their biologics for HS. The risks of poor HS treatment adherence include worse symptoms and treatment outcomes. Overcoming your fear of injections may help you take your medications more consistently, which could improve the way your treatment works and how HS affects you.
HS can be a treatment-intensive condition, often requiring many health care provider visits to diagnose, treat, and manage it over the long term. If you’re living with HS, chances are that blood will eventually be drawn (and needles involved). This is especially true if you’re on a biologic that requires regular follow-up testing and monitoring to make sure the treatment is working well.
If you have a fear of needles, you’re not alone. Around 20 percent to 30 percent of adults are afraid of needles. If your needle aversion is a barrier to your health and to adding a biologic to your HS regimen, it’s a good idea to overcome your fear of injections.
The good news is, for most people, overcoming the fear of injections is doable, even for those with trypanophobia, the extreme fear of medical procedures involving needles. You can find a wide array of tools and strategies to help you overcome your fear of injections. Knowledge can boost confidence, which can decrease fear. Maybe getting to the core of your fear and understanding it better can help you overcome it.
Believe it or not, your fear of injections could be genetic. According to an article in the journal SAGE Open Nursing, 80 percent of people afraid of needles have at least one close family member with the same fear. In addition, many people can trace their fear of needles to a traumatic or painful event in their childhood. Fortunately, fear of needles tends to decrease with age. Most children fear injections, about half of all adolescents fear injections, and up to one-third of adults do.
For many with severe to moderate HS, the benefits of self-injectable biologics far outweigh the fear of the needle and the pain of their condition. “At first I was scared, but I am glad I got over that,” shared a myHSteam member who overcame their fear and now uses biologics. “It is the best my skin’s been and the least amount of pain I have been in for months now.”
Understanding how self-injection works may help you gain confidence and overcome your fears. Do your research and talk to health care professionals to learn all you need to know about self-injecting your HS treatment.
If injection pain is a major concern, there are ways to reduce and manage the pain before, during, and after an injection. Bring your meds closer to room temperature from their refrigerated storage before you inject them. To reduce any pain or swelling, numb the injection site with an ice pack or a topical anesthetic cream like lidocaine before and after self-injecting.
Self-injection may be better if you have support — from both doctors and peers. A study tracked more than 2,200 people taking adalimumab for an autoimmune condition, half of whom joined a treatment-specific patient-support group (PSP). More PSP participants than nonparticipants took their adalimumab as directed in the first year, reported better management of their condition, and went to the hospital for their HS fewer times.
On myHSteam, the social network for people with HS and their loved ones, more than 26,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.
How do you cope with your fear of injections? Do you have any advice for getting used to self-injections? Join the conversation in the comments below or post on your Activities page.