A typical new patient encounter from the HS Center
The below is a transcript of Dr. Cohen's video of a typical patient encounter from the HS Center, with edits for clarity.
What is Hidradenitis Suppurativa (HS)?
HS is a disease of the hair follicles. We have hair follicles all over our body. Obviously, you have hair follicles on your scalp and your eyebrows, but you actually have hair every place on your body except for your palms and your soles and your your lips. It's very unusual that in this particular disease, you only get HS in certain areas. This includes your underarms, breasts, abdominal fold, upper inner thigh, groin, and buttocks.
There's also another condition, which is in the same family, called a pilonidal cyst, which occurs at the base of the spine. HS is part of a family of diseases that are all related to acne, and they all have a similar starting point - the hair follicle.
What is a hair follicle?
You can think of the hair follicle itself as long and thin, like a test tube. The hair itself is actually not a living structure. Once the hair starts to grow, the hair grows out, but there are many other things in the hair follicle in addition to the hair. There are the oil glands, also called the sebaceous glands, and they produce oil that has to come out of the same opening as the hair. There's also a lot of bacteria in your hair follicles. It's normal for everybody to have bacteria inside their hair follicles. Usually, they're not doing anything and are no problem for us, but when you have HS, they can become a problem.
What causes HS?
What happens in all these acne family diseases is that you have inflammation of the hair follicle. It starts when the hair follicle closes up on the top. These diseases are often called follicular occlusion diseases, with occlusion meaning closing off. When the hair follicle closes off, the hair keeps on growing and it has no place to go. So it coils up inside of the hair follicle. The oil has no place to go, so it starts to build up, and the hair follicle starts to bulge. Then the bacteria have more room to grow. Ultimately, the follicle gets so full that sometimes it will just open up - and that is good because it doesn't cause a problem when that happens. But other times it'll just break open under the skin (rupture) and trigger even more of an inflammatory response.
When the hair follicle ruptures, your immune system sees what's inside the hair follicle and it begins to trigger an immediate response. First of all, it hates the bacteria - it thinks the bacteria are foreign invaders - even if they're doing nothing, it doesn't see them as friends. The immune system starts bringing white cells, or pus, to the area. So you get all this pus that's coming in from all of the white cells, which can be a good thing if you're having a true infection, but it's not such a good thing in HS because it starts causing random inflammation.
The second thing is that you get blood vessels coming in because the blood vessels are bringing in the white cells. The blood vessels get enlarged and engorged with the white cells. Sometimes if the follicle ruptures at the top, you'll see the pus will come out of the surface. The other thing is that the immune system really doesn't like the hair - it sees the hair as being a foreign body, like a splinter - so that also stimulates further inflammation.
Once you get this ruptured hair follicle you have a tremendous amount of inflammation going on, which is painful, and it is part of the process that is at the center of HS.
How is HS treated?
One thing we want to treat is the bacteria. We want to try and reduce the bacteria even if you don't have an active HS episode. We want to keep the bacteria down, so that if you do have a hair follicle rupture, there won't be that much bacteria in there.
We recommend using an antibiotic soap and an antibiotic gel. You wash the area that you have HS with the antibacterial soap, called Hibiclens (chlorhexidine), instead of regular soap. You can wash in the shower or sink, and then you pat the area dry. Then, you take a small amount of the antibacterial gel, make your fingertips wet, and massage it into the areas where you have HS. This external antibiotic coverage for the HS areas can be preventative, because it basically helps to keep the overall bacteria level down.
If there is deeper involvement, we may recommend systemic antibiotics to treat the bacteria. These antibiotics go into your bloodstream. One good thing about the inflammation is that it dilates the blood vessels. Not only does this bring the white cells to the affected areas, but it will bring the antibiotic too. This is also one of the reasons we like to use hot compresses on areas that are really painful and uncomfortable because the hot compresses bring more blood in and get more antibiotic into that site.
We have a few different types of antibiotics. We have antibiotics that cover bacteria that grow in the presence of oxygen - called aerobic bacteria. But if you have very deep involvement in some areas, you may need a special antibiotic for the deeper bacteria, called anaerobic bacteria. Anaerobic bacteria can grow in the absence of oxygen, so they don't need air to grow, and there are special antibiotics for that, because regular antibiotics like penicillin don't cover anaerobic bacteria.
The other thing that is going on during this process is that you have a lot of inflammation. The inflammation is causing a lot of pain, so we really want to suppress that inflammation. We have a few different ways of doing that, but one of the most effective options is to give you a biologic agent. This is a special medication that goes inside your body and can decrease the inflammation long-term.
For HS, we have a few types of these agents, such as humira (adalimumab), which you inject into your body yourself. There are also biologics that are given intravenously, such as infliximab. The intravenous option can be beneficial, because it is weight-based and the dose and frequency can be adjusted depending on disease severity.
Another type of treatment we use is anti-androgen therapy. The majority of people with HS get it in their teens, oftentimes with puberty. As we've learned from treating acne, if we block certain hormones, it can help acne a lot. So we've we've applied that to the treatment of HS, and it really makes a big difference. With anti-androgen therapy, we can directly block it through a few different medications, or for females, we may also recommend oral contraceptives (birth control pills).
Birth control pills can be very effective for some female patients. The estrogen and the androgen have a “yin-yang” relationship. If you have a lot of female hormone, it blocks the male hormone. When you have a lot of male hormone, it blocks the female hormone. Women who have polycystic ovary disease have a lot of male hormone, and this causes irregularities in their menstrual cycle. In HS, we've found that blocking male hormones (or androgens) either with birth control pills or with a direct male hormone blocker medication called spironolactone (for females), or sometimes we use another medication called finasteride (for males or females), it won't cure your disease, but it will definitely help it. There are a whole range of treatments and, like with any treatment, it will require some trial and error to see what works.
The medications can all be taken together, but sometimes people do not tolerate oral antibiotics. They may get an upset stomach, or feel dizzy. We want you to feel better. We don't want you to feel worse. So if something doesn’t work, you have your doctor’s contact information, and we want you to contact us.