Chapter contents
I. Introduction
While there is no cure for HS, there are ways to reduce the number of flares you suffer and decrease the pain, drainage, and extent of your disease. This can be done by taking medications, undergoing procedures, and making changes to your lifestyle as recommended by your healthcare provider.
The goal of HS treatment is not only to treat what is painful now, but also to prevent flares from occurring in the future. This means that, even if your condition improves soon after you begin treatment, you should continue to follow the plan set by your healthcare provider to prevent new lesions from appearing in the future.
When deciding on a treatment plan with your healthcare provider, things to consider include: how quickly a treatment will start to work, whether a treatment provides short-term or long-term benefits, how severe your HS disease is, and how different treatments can be used in combination for you.
It is also helpful to have a discussion with your healthcare provider regarding treatment expectations.
II. Speed of Onset of Treatment Benefit
There are many different treatments for HS. Some may work very quickly, while others may take longer – sometimes many months – for you to notice an improvement. For example, if you receive an “intralesional kenalog injection,” or a steroid shot, in a painful lesion during your visit, you can expect pain and redness in the area to decrease within a few days. These shots are useful for treating what is painful now, but are not useful for preventing future flares. In contrast, if you start taking a type of injectable medication called a “biologic” (such as adalimumab, or “Humira”®), it might be a few months before you notice an improvement.
While these medications do not always provide immediate pain relief, they are a long-term management option for HS.
III. HS Severity
Regardless of the severity of your HS, the goal of HS treatment will be to reduce pain, drainage, scarring, and the intensity and frequency of flares.
However, the best treatment to achieve these goals may vary based on the severity of your disease.
Disease severity is often categorized as mild, moderate, or severe. It is important to know that patients with mild disease may suffer the same impact on their quality of life as those with more severe disease. Healthcare providers will recommend a treatment for you based on the severity of your disease, the expected benefits and side effects of potential treatments, your medical history, and your personal preferences for treatment. Thus, a healthcare provider may recommend that, if your disease is mild, you start with one or two topical or oral medications, such as topical benzoyl peroxide and oral antibiotics. If your disease is severe or does not respond well to treatments, the most effective treatment may be a combination of biologics, oral medications, topical medications, and steroid injections. It is important to discuss with your healthcare provider how severe your disease is, and to understand why certain treatments were suggested to you.
IV. Managing Treatment Expectations
Given there is currently no cure for HS, understanding the expected benefits that your treatments may have can be helpful to avoid disappointment. Goals of treatment should always include reducing any physical symptoms (such as pain and drainage). In addition, it is helpful to evaluate whether you think a treatment is helping in terms of the intensity, frequency, and duration of your flares. This means that you may still get lesions, but they may be smaller and less painful. Instead of getting flares every month, for example, they may occur less frequently – such as every other month – and last for shorter periods.
If you have many large lesions or lesions with drainage in multiple areas of your body, or if you have extensive scarring from past lesions, an additional treatment goal may be to remove diseased tissue. Even if medical treatment is effective and flares occur less frequently, medical treatments will not make a tunnel disappear or remove existing scars; it is likely that you will still have some scarring, unless you have a treatment aimed specifically at reducing your scars—such as a surgical procedure.
V. Individualized Treatment Plan
Treatment responses can vary from person to person, meaning that a treatment that helps someone else may not help you to the same degree. Once you begin a treatment, following up regularly with your healthcare provider can help you determine whether a treatment is working well for you. Depending on how your body responds, your healthcare provider may change your medication or add new ones. It is common for patients to use a combination of treatments. HS is a chronic condition that requires long-term care. Visiting your healthcare provider regularly to track your condition and determine what treatments work for you can keep painful flares at bay and prevent permanent damage to your skin.
VI. Questions and Answers
Question 1 How will I know if a treatment is working? AnswerIf a treatment is working, you can expect the number of painful lesions to decrease. You can also expect flares to occur less frequently, and with less severity. It can become easier to perform daily activities if they were previously difficult, such as walking or raising your arms. You may also notice that scars from past lesions become softer or return to your original skin color, although this process takes months to years.
Question 2 How do healthcare providers know if a treatment is working? AnswerHealthcare providers often use grading scales to determine if your condition is getting better or worse. The scales may use factors such as: the number and type of painful lesions, the number of different body areas affected by HS, and the level of pain you feel based on a scale of 0-10 to track changes to your condition. Healthcare providers may also use a grading scale to determine how HS is affecting your daily life, mood, and relationships.
Question 3 How long will it take for a treatment to start working? AnswerThis depends on the treatment. If you get an injection of “steroids” into a painful lesion, you can expect pain relief within a few hours to days. If you take a type of injectable medication called a “biologic,” it may take longer, sometimes months, before you notice significant changes to your disease. Often, healthcare providers will suggest giving a biologic at least a three-month trial to see if you have any benefit before deciding to change treatment course. Some patients may have only mild improvement after three months, but can continue to improve. Therefore, it may be recommended that they continue on this medication for a longer period of time before changing therapies. Hormonal treatments (such as spironolactone or some forms of birth control pills) that are used to help reduce menstrual flares of HS may take even longer, sometimes four to six months, before all the benefit is seen.
Question 4 What will my skin look like after successful treatment? AnswerAfter successful treatment, your HS lesions should first feel less painful and swollen. Patients with HS then notice that their flares do not last as long as before, even if they are having the same number of flares. Or, they will notice their active lesions becoming smaller. Finally, HS patients will note fewer lesions that are both smaller and less bothersome, and – with the best outcomes – they may have almost no lesions, or almost no flares. In addition, new scar formation should have stopped or dramatically slowed. Over the long term, scars may become softer in texture and darker, or discolored skin may slowly change back to your normal skin color as you continue your treatment. This will take many months and can continue to change for up to two years. Sometimes, the skin texture is permanently changed in areas where you had active HS lesions, and you may be left with skin that looks slightly discolored and is thinner or thicker than areas of unaffected skin.
Question 5 Will my flares stop once I start treatment? AnswerIf your treatment is effective, flares should occur less often. Whether or not flares stop completely will depend on how effective the treatment is for your HS. For most people with HS, continued treatment can improve the intensity and duration of flares significantly, but it is not uncommon to still get one or two flares throughout the year, especially in times of hot weather, stress, or other triggers.
Question 6 Can I stop treatment when my condition gets better? AnswerIt is best to continue treatment until your healthcare provider tells you otherwise. In addition to following your treatment plan, it is important to have a wound care plan and to avoid triggers.
Question 7 Is there a cure for HS? AnswerUnfortunately, there is still no cure for HS. While you cannot get rid of it, you can help prevent painful lesions from occurring by following treatment plans that you and your healthcare provider have discussed and agreed upon. Healthcare providers are still doing a lot of research on HS, and we hope to have better treatments in the future.
HOW TO KNOW IF A TREATMENT IS WORKING
WHAT PATIENTS AND HEALTHCARE PROVIDERS LOOK FOR
Number of painful lesions decrease
Number of abscesses, nodules and tunnels decrease
Flares are less frequent and involve less lesions
Number of affected body areas decreased
Scars become softer and return to your original skin
color- this process can take a long time!
Overall pain level decreases
It becomes easier to perform daily activities, such as walking
Quality of life increases
Key Points: Treatment Goals
Continue treatment even if your condition improves.
Some treatments work quickly, while others take longer.
An effective treatment will reduce the number and severity of flares.
See your healthcare provider regularly to keep HS under control.
HS TREATMENT CAN BE EFFECTIVE WITH THE RIGHT MEDICATIONS AND LIFESTYLE CHANGES.