Chapter contents
I. Introduction
Why is it that the same HS treatment can be very helpful for some people while only slightly helpful or not helpful at all for others? This is because HS is a heterogeneous disease, which means it may have different causes and triggers in different people. Given this, it can be helpful for both healthcare providers and people with HS to view the options for HS treatment as a “toolbox”.
The tools used by different people with HS may differ since their HS may be triggered by different things. For example, for some people, hormones may be a strong driving force for disease activity, in which case, starting a medication that targets hormones would be beneficial.
Having a variety of tools in the HS toolbox is valuable because different tools are appropriate for different situations. Sometimes the situation for a person with HS changes, so the tools used to treat their HS also needs to change. This chapter discusses how to think about the tools available in the HS toolbox.
II. Your HS Toolbox and Your Doctor
If your HS is triggered by a combination of causes, you may need a combination of different types of medicine to get the best results. Currently, choosing the best therapy or combination of therapies to treat HS typically involves some trial and error.
You may need to try different treatments to find what works best to control your HS. Because of this, working with a healthcare provider who is knowledgeable about HS can be really helpful because they are familiar with the HS toolbox. They can help choose tools that are best for you, taking into consideration the specifics of your case (for example, your HS disease severity and any treatment preferences).
III. HS Toolbox Medicines
The HS toolbox is made up of a wide variety of treatment options listed by medical experts in guidelines and reviews based on clinical studies and expert opinion. These treatment guidelines and reviews are accessible through the Hidradenitis Suppurativa Foundation’s website (www.hs-foundation.org).
It is important to keep in mind that different treatment options are appropriate for different disease severities. Some treatments, such as oral antibiotics like doxycycline, do not seem to work as well for people who have severe HS (such as Hurley Stage 3) as they do for people with mild HS (Hurley Stage 1). On the other hand, adalimumab is only approved for people with moderate to severe HS.
When it comes to combining therapies from the HS toolbox, sometimes it is helpful to combine medicines of the same type while other times it is helpful to combine different types of medicines. For example, sometimes combining two or three antibiotics together may be more helpful than just treating HS with one antibiotic. For women with menstrual HS flares, taking an oral contraceptive pill (also known as a birth control pill) and spironolactone together may work well. Both of these medications work to target the hormonal component of HS.
There are also successful examples of combining two different medicine types from the HS toolbox. One example of this is the combination of oral antibiotics with a biologic, such adalimumab (Humira®). For some people, taking doxycycline may be enough to control their disease. However, for those who find that doxycycline helps them but not enough, their healthcare provider may suggest combining it with adalimumab, and then continuing adalimumab long-term since oral antibiotics are not a long-term treatment.
There are no firm rules about how long a medicine should be tried before giving up on it, or before adding on another medicine to try to get better results. Please see Chapter 12 for more information on HS treatment goals and how to manage your treatment expectations.
IV. Non-Medicines in Your HS Toolbox
In addition to medicines, the HS toolbox also has other tools that can help with HS. Depending on your situation, surgery and/or laser treatment may be tools from the toolbox that are helpful, likely in combination with medicines (please see Chapter 21 for further information about HS surgeries). Additionally, lifestyle modifications, such as not smoking, weight management, and diet adjustments may be good for your general health and may help with HS. It can be challenging to stop smoking or make diet changes, so it is important not to feel guilty or blame yourself if you struggle to make lifestyle modifications. Some people with HS report finding it easier to make lifestyle changes after they have started medicines that get their HS under control to the point where they have more energy to work on lifestyle changes.
V. Questions and Answers
Question 1 Some of the medications I’ve tried didn’t work, so why would my healthcare provider recommend them again? AnswerIt is possible that your healthcare provider had forgotten, or did not notice in reviewing notes for the visit, that you have already tried the medication. This is especially likely if it has been a long time since you took this medicine, or if another HCP prescribed it. Before your doctor visits, it can be helpful to refresh your memory of your treatment history: remembering which medicine(s) you have tried, at which doses, for how long, whether they helped at all, and whether they caused any side effects.
It is also possible that your healthcare provider may recommend a medicine again because they think that in the past you did not try it for a long enough time or at a high enough dose.
Another possibility is your healthcare provider may think a medication that did not work for you previously may help when taken in combination with another medicine. Some treatments may not work as well by themselves, but can help another medication work better.
Question 2 What can I do to decrease my “medication burden”? AnswerMany people with HS feel that they have a great number of medications (to apply and/or to take) and it can become a source of frustration. This is understandable: taking lots of medicines is burden some and can feel like a lot of work. It is important to be transparent with your healthcare provider about how you are feeling about your treatment plan and to voice any concerns you have. It may be helpful to ask your healthcare provider if you can add on one treatment at a time if you are worried about becoming overwhelmed. Generally, it is easier to take pills once a day than twice or three times a day—check to see if it is okay for you to take your medicines together, and to take them once per day.
Question 3 Why did my healthcare provider recommend taking more than one type of medication for my HS? AnswerYour healthcare provider may prescribe several medicines in hopes of targeting different potential causes of HS and having the medications work together to optimally benefit you. When you say to yourself “This medicine did not work,” ask yourself if you are sure that the medicine did not help, even a little.
Question 4 Are the risks of side effects higher if I take more than one medication for HS? AnswerYes, unfortunately the risks from taking two medicines together may be equal to, or sometimes greater than, the risks of taking each medicine separately. Situations where risks of two medicines together are greater than either medicine by itself include: (1) if one medicine causes the blood level of the other medicine to rise, even if you do not change the dose of the other medicine, or (2) if both medicines have a similar effect on your body (for example, if both are suppressing your immune system).
When adding a new medicine, it is important to check with your healthcare provider or pharmacist to see if the risks of any side effects are higher from combining the new medicine with your other existing medicines.
Keep in mind that just because the risk of side effects is higher does not automatically mean it is a bad idea to combine medicines. For example, it is possible that the extra benefit from combining medicines is much greater than the extra risk.