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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FDA Approves Drug to Treat Rare Autoimmune Disease

The U.S. Federal Drug Administration (FDA) has approved a drug manufactured by ChemoCentryx to treat a rare group of autoimmune diseases, called anti-neutrophil cytoplasmic autoantibody-associated vasculitis, or ANCA-AAV for short. According to ANCA Vasculitis News, ANCA-AAV causes inflammation and damage to the body’s small blood vessels. This inflammation is the result of antibodies that bind to certain cells of the immune system, called neutrophils, and overly activate them.

Since small blood vessels are found throughout the body, ANCA-AAV causes a variety of symptoms, including:

  • Poor kidney function, leading to kidney failure
  • Severe respiratory problems, including shortness of breath, hoarse voice, cough with blood or mucus, and chest pain
  • Neurological symptoms, including tingling, burning, numbness, and weakness
  • Central nervous system (CNS) involvement, such as headaches, cognitive impairment, and memory deficits. In severe cases, seizures, paralysis or loss of consciousness may also result.
  • Ear, nose, and throat (ENT) symptoms, like sinusitis, nasal discharge, rhinitis, and tinnitus (ringing in the ears)
  • Eye symptoms, including eye pain, vision impairment, and vision loss
  • Joint pain, muscle pain, and muscle loss
  • Skin lesions, including rashes, sores, ulcers, bumps, and bleeding underneath the skin
  • Digestive problems, like vomiting, diarrhea, nausea, abdominal pain, and blood in one’s stool
  • And more…

Due to the numerous symptoms ANCA-AAV causes, it can often be fatal for patients; in fact, ChemoCentryx states that the first year mortality rate for patients living with the disease is between 11 and 18 percent. Current ANCA-AAV treatments on the market include steroids and immunosuppressant medications which compromise the body’s ability to fight off infections. That’s why having a new treatment on the market that works via a different mechanism may be a saving grace for many ANCA-AAV patients.

The new drug, called avacopan, will be sold by ChemoCentryx under the brand name Tavneos. It works by blocking a protein called C5a receptor that is responsible for causing numerous inflammatory diseases. The drug’s wholesale price will be an astronomical $150,000-$200,000 per patient per year. However, it could be the life-saving treatment that the 40,000 ANCA-AAV patients in the US need.

The drug is currently being tested for use on other conditions as well, including the autoimmune skin disease Hidradenitis Suppurativa (HS). The drug has already received approval for commercialization in Japan, and is expected to be approved in Europe by the end of 2021.

Martina, a 29-year-old mother-of-two from Stuttgart, Germany, describes what it was like being diagnosed with this challenging autoimmune condition:

“It began rather unspectacularly, with flu-like symptoms, fever, headaches, and joint pain. So anyone would think, ‘It’s just a normal flu.’ Then it got worse over the course of a week and I went to the hospital.”

She was eventually diagnosed with ANCA-AAV after undergoing a series of blood tests. Unfortunately, she had to give up her career as an educator in the process, since she didn’t have a strong enough immune system to be interacting with children while taking steroids and immunosuppressants to control the disease. Patients like Martina are the ones that could potentially stand to benefit from new drug therapies like avacopan.

Martina, 29, appears in an ad to raise awareness for vasculitis conditions.

To find resources for those living with ANCA-AAV and their caretakers, visit: https://www.myancavasculitis.com/living-with-aav/

Laser Hair Removal for Hidradenitis Suppurativa (HS)

Can laser hair removal be an effective treatment for patients with Hidradenitis Suppurativa (HS)? Photo via Good Housekeeping.

For those of you who are new to the Autoimmune Warrior blog, I have two autoimmune conditions – Sjogren’s Syndrome and Hidradenitis Suppurativa (HS). Over the years, my HS has taken a backseat while I’ve dealt with my Sjogren’s symptoms.

In the past year, however, I’ve been more active about working with my dermatologist to manage this chronic autoimmune skin condition. By actively managing my HS symptoms, my hope is that I won’t move past Hurley Stage I of the disease, or even go into remission.

As I noted in my last blog post about my new Hidradenitis Suppurativa treatment plan, I’ve been working with a new dermatologist who has prescribed me a topical cream called resorcinol, in addition to the clindamycin and Hibiclens that I routinely use. Besides topical treatments, however, I’ve also started getting laser hair removal in my groin and underarms, which are the main areas where Hidradenitis Suppurativa affects me.

What does the science say?

For those who are unaware, laser hair removal has been cited as a way to reduce HS symptoms like boils and abscesses in the groin, underarms, and elsewhere in the body’s axillary regions. The logic is that, by using a laser to destroy your hair follicles, the follicle cannot get clogged; this is important, since, as my dermatologist explained, follicular occlusion is one of the main parts of the disease.

In fact, studies have shown that patients with Hidradenitis have seen improvement in their HS symptoms after receiving laser hair removal treatments. A 2011 study found that when 18 patients were treated in a single area affected by Hidradenitis twice a week with intense pulsed light over four weeks, they experienced ‘significant improvement’ in the mean examination score of their lesions. The patients also reported being ‘highly satisfied’ with their treatment.

Laser hair removal in HS patients

There are different types of lasers that can be used for laser hair removal. Some of the more effective ones have been found to be the long-pulsed lasers such as the IPL and Nd:YAG laser. The Nd:YAG laser in particular has found to be more effective on darker skin tones; this is because the laser needs to distinguish between your hair and skin color in order to work. Some clinical trials using the CO2 laser have also shown promise in the treatment of HS, but larger study samples are needed.

In addition to these studies, anecdotal evidence from other HS patients is what motivated me to move forward with getting laser hair removal to treat my hidradenitis. Reading the experiences of other bloggers who are living with the condition and have found positive results after laser hair removal gave me hope that I could experience the same benefits.

Drawbacks of laser hair removal for Hidradenitis Suppurativa

There are, however, some drawbacks to consider when getting laser hair removal to treat your HS. If you are at Hurley Stage III of the disease, for example, laser hair removal may not be the best option for you, since your skin is highly sensitive, and the laser may exacerbate inflammation and cause undue pain to the area(s) affected. Also, the laser may not be able to penetrate scar tissue that has formed as a result of your HS. For patients at an advanced stage of the disease, wide-excision surgery or deroofing may be better options instead, in combination with antibiotics or even immunosuppressants like Humira. In summation, laser hair removal is a more practical option for those with Hurley Stage I or II of the disease.

Also, though laser hair removal technology continues to evolve, if you have a darker skin tone and dark hair, or a lighter skin tone and light-colored hair, you may not be a good candidate for laser hair removal, since the laser may not be able to distinguish between your hair and skin.

Another drawback is the expense. Laser hair removal can cost thousands of dollars, depending on the type of laser used, the number of treatments necessary to see results, and the size of the area. Getting your laser treatment done at a medical clinic by a doctor or nurse, or at a beauty salon by a certified technician, may impact the price you pay. Furthermore, many health insurance plans do not cover the cost of treatment, since, despite the research out there, laser hair removal is still not a universally recognized treatment for hidradenitis suppurativa, and is viewed as a cosmetic procedure.

Finally, laser hair removal can take a long time. At the clinic I am going to, laser hair treatments are usually delivered every 4-8 weeks, depending on the area being treated. I am getting treated every 6 weeks, and while I think it is worth it to see results, patients looking for a more immediate change may be disappointed with such slow progress.

Should I get laser hair removal to treat my HS?

In conclusion, whether or not you should move forward with getting laser hair removal to treat your hidradenitis suppurativa symptoms is really a decision that should be made between you and your dermatologist. While HS is not an easy condition to live with, as biotechnology and pharmaceutical treatments evolve, and as patients and medical professionals become more aware of alternative treatment methods, there is hope for those living with HS.

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