Update: Everything That’s Worked to Treat my Hidradenitis Suppurativa

Hey y’all – instead of the usual scholarly article, I’m doing a personal blog post about my journey with hidradenitis suppurativa (HS). As I’ve detailed in past blog posts, I’ve been living with this condition for the past 10 years, though I only got officially diagnosed with HS four years ago by my dermatologist.

Since then, I’ve tried a number of different treatments to reduce the symptoms of my Hurley Stage I hidradenitis suppurativa. While many treatments didn’t work, here’s what did (and remember, always consult your doctor before starting a new medication or treatment plan!)

1. Laser Hair Removal

Laser hair removal has been shown to ‘significantly improve’ HS symptoms in patients who participated in a 2011 study where they were treated with intense pulsed light twice a week for four weeks. The belief is that by killing the hair follicle with a laser, this auto-inflammatory condition is less likely to cause boils, abscesses and cysts in follicle-rich areas of the skin, like the underarms and groin.

There are several cons to laser hair removal to consider; the treatments are costly and are rarely covered by health insurance, since laser is not a widely-recognized treatment for HS. It’s also unlikely that someone with Hurley Stage III HS could receive laser treatments, since the laser cannot penetrate scar tissue, and it would be too painful for patients with an advanced stage of the disease.

Despite these drawbacks, I personally have seen a great improvement in my HS symptoms after attending seven sessions every six weeks over the course of one year. I would estimate that I’ve seen an 80% reduction in HS lesions on my skin at around the fourth treatment onwards with the Alexandrite laser (my clinic recommends at least nine treatments to see the best results).

2. Antibiotics

When I was first diagnosed with HS, I was having issues with recurrent, painful boils and cysts in the groin and underarm areas – classic hidradenitis symptoms. Sometimes these lesions would become infected and rupture (TMI, I know!) However, my dermatologist wasn’t a fan of antibiotics, so she didn’t prescribe them to me.

I ended up moving to a different city, and from there, started going to a new dermatology clinic. At the new clinic, I was put on a 90-day course of 100mg of doxycycline, an antibiotic, which my dermatologist explained would bring down the inflammation levels in my skin, and be more preventative in nature compared to the treatments that I had received in the past. After the first 90 days, I noticed a dramatic improvement in my HS, both in terms of the number and severity of the boils I had. Since HS is an auto-inflammatory disease, it made sense that antibiotics worked, but since very few treatments had worked previously, I was pleasantly surprised!

After those first 90 days, I was then put on a lower dosage (50 mg) of doxycycline, since patients aren’t typically given high dosage antibiotics for long-term use. I was worried that my boils would come back with the lower dosage antibiotics, but they have not returned to their previous levels as of yet.

3. Steroid Injections

Prior to going the antibiotics and laser hair removal route, I had been given steroid injections by my dermatologist whenever I had a painful and/or large abscess on my skin. The steroid gets injected directly into the boil underneath the skin, which can be pretty painful, but helped to calm down the inflammation in my skin almost immediately.

I used to get golf ball-sized cysts that had to be injected, and after they were injected, they would deflate to more of a grape-sized cyst, and the pressure against my skin felt like it was relieved. While steroid injections may not be a long-term solution, and more of a ‘reactive’ (rather than proactive) treatment, they definitely helped get me through some of my worse hidradenitis suppurativa disease flare-ups.

4. Topical Solutions

I currently use a number of creams and cleansers – all prescribed to me by my dermatologist – to help me keep the areas affected by HS as clean and exfoliated as possible. Firstly, I shower with Hibiclens, which is used by healthcare professionals to ‘scrub in’ at clinics and hospitals, and helps to keep the affected area sanitary. Although it was prescribed to me by my dermatologist, it’s also available over the counter at many pharmacies.

Secondly, I use Clindamycin, also known as benzoyl peroxide, after my shower. This is a topical antibiotic that helps to prevent infections, which is super helpful if you have HS boils that open up, exposing your skin to a potential bacterial infection.

Thirdly, I use a cream with 15% Resorcinol, which, in a 2010 study, has been shown to improve the pain and duration of HS lesions. I get my cream from a compounding pharmacy called ChemistryRX, though I have seen Resorcinol skincare products for sale online (just with less of the active ingredient in it).

Finally, I use Tretinoin, a Vitamin A derivative, which helps to get rid of all those pesky little blackheads that appear after a skin lesion has begun to heal. I know this is a lot of different skincare products for hidradenitis suppurativa, but those of you who have this skin condition will know that you have to fight this disease with everything you’ve got!

5. Zinc Supplements

I take 50mg of zinc supplements daily. While it hasn’t been definitively proven that there is a link between hidradenitis suppurativa and zinc deficiency, some initial studies have shown promise in the treatment of HS with zinc gluconate. A 2012 study in France, for example, showed that when patients with HS lesions were treated with 90mg of zinc gluconate each day over the course of 3 months, they experienced a significant alteration in the balance of inflammatory markers in their body, as compared to samples collected before the zinc treatment. This imbalance in inflammatory markers may be the underlying cause of hidradenitis suppurativa.

Although I’m not 100% sure that zinc supplementation is working to reduce my HS lesions, I decided that I didn’t have much to lose by taking a daily zinc supplement, a mineral which many of us are deficient in anyway. If you don’t want to swallow a pill to get your zinc, some natural sources of zinc include: meat, shellfish, dairy, eggs, legumes, whole grains, nuts and seeds.

That’s it for today’s blog post! What has helped you to improve your hidradenitis suppurativa (HS)? Let us know in the comments below!

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My New Hidradenitis Suppurativa Treatment Plan

Last year, I switched health insurance plans, and as a result, the dermatologist that I was seeing to treat my hidradenitis suppurativa (HS) was no longer in-network. So, I had to find a new physician. I found a new dermatologist in my area that was covered under my health insurance plan, so I made an appointment and saw her for the first time last week.

My last physician – who diagnosed me with this chronic autoimmune skin condition – had been treating my hidradenitis by giving me cortisone (steroid) injections. While this was effective to control the inflammation and pain caused by my HS boils, it wasn’t really a long-term solution. I had also been prescribed clindamycin lotion to put on my hidradenitis lesions after showering, and over-the-counter Hibiclens, a wash that medical staff use to ‘scrub in’ in order to prevent any infections from occurring. However, neither of these topical solutions have gotten rid of my HS boils.

My new dermatologist was very caring, and didn’t rush me at all. She suggested that I use a new topical solution called resorcinol. Resorcinol is not covered by my health insurance, since it’s not made by a typical pharmacy, but rather, a compounding facility. While this is a downside, I did some research about the medication, and according to the Journal of the American Academy for Dermatology (JAAD), a 2010 study found that when patients with Hurley stage I or II HS used topical 15% resorcinol twice daily for 30 days, they saw a ‘marked decrease in pain and mean duration of the lesions’.

Below are the side-by-side results from the study. The first left-side image (A) is the patient’s baseline state, the second (B) is seven days into treatment, and the third image (C) is 30 days into the treatment. The right-side images (D, E, and F) are the respective lesions shown via ultrasonography.

Image courtesy of the JAAD (Journal of the American Academy for Dermatology).

Beyond the resorcinol, I spoke with my dermatologist about a medication called spironolactone for hidradenitis suppurativa treatment. Spironolactone is commonly used to treat acne and other similar skin disorders. Although HS is sometimes referred to as ‘acne inversa’, anyone with the condition knows that it’s not acne – not even close! That being said, HS may be similar to acne in the sense that it may be affected by hormones. Plus, a 2017 study of 46 women with HS found that acne and polycystic ovarian syndrome (PCOS) were the most commonly reported comorbidities with hidradenitis. The same study found that spironolactone was effective, even in small doses, for managing patients’ pain and inflammatory lesions.

Though I haven’t decided whether or not to move forward with spironolactone treatment yet, I thought it was interesting that there was a potential connection between HS and hormones, especially since I myself have adult acne and have had multiple ovarian cysts in the past. Plus, I have Sjogren’s Syndrome, an autoimmune disease that may also have a hormonal component. I do notice that my hidradenitis boils do worsen on a pre-menstrual basis.

I also discussed with my dermatologist getting laser hair removal in the areas most commonly affected by HS – the groin and underarms. She did say that laser hair removal does help with the follicular occlusion aspect of the disease. Obviously, there are drawbacks – for example, laser hair removal is almost impossible to do in patients with Hurley stage III of the disease, because it’s simply too painful. It’s also not usually covered by insurance, since it’s considered a cosmetic procedure, rather than a medical one. But, it’s another option that I want to consider since I’m still at stage I of the disease, and would rather have laser hair removal than wide-excision surgery.

Do you have hidradenitis suppurativa? If so, what treatments have been most effective for you? Let me know in the comments below!