Hidradenitis Suppurativa – Autoimmune Warrior

Autoimmune Disease Sucks…And You Can Handle It

I’m currently reading the book Diabetes Sucks And You Can Handle It by Dr. Mark Heyman, a psychologist who lives with Type 1 Diabetes (T1D). For those of you who don’t know, T1D is an autoimmune disease in which the immune system destroys the pancreatic cells that produce insulin.

Although I don’t have type 1 diabetes myself, I started reading the book because I work for a continuous glucose monitoring company, which produces medical devices for those with diabetes to help them monitor their glucose levels. Reading about diabetes has given me some insight on what it’s like to live with this challenging chronic illness.

As I was reading Dr. Heyman’s book, I realized that there are a lot of similarities between living with T1D and other autoimmune conditions, like Sjogren’s Syndrome and Hidradenitis Suppurativa, which I live with. Being diagnosed with any kind of chronic health condition can be overwhelming, especially at first. You may think, ‘What did I do to deserve this?’ or other unhelpful thoughts. Even after the initial shock of your diagnosis wears off, there is the ongoing challenge of having to live your ‘new normal’ of life with a disease. It can also impact your ability to do the work and activities that you love.

Dr. Heyman says that the first step to living well with diabetes is to first acknowledge that IT SUCKS. This may seem counterintuitive…after all, if you’re struggling with living with an illness, thinking about how much it sucks would only make things worse, right? But Dr. Heyman says that oftentimes, those with T1D try to ignore their disease, or to think positive thoughts only – this just doesn’t work. You can’t ignore your health problems as if that’ll make them going away. And trying to force yourself to only think positively is basically the definition of toxic positivity.

As Dr. Heyman explains, the best way to live well with diabetes is to acknowledge that although it sucks, you can handle it. Here is a brief excerpt from the boook:

You can handle T1D because you have T1D. I know this sounds like circular logic, but it isn’t. Diabetes is demanding. It requires a lot from you. And you are doing it. You may not be perfect, and it may not feel like you’re doing a great job at handling it. Feeling overwhelmed, and burned out are not signs that you can’t handle T1D. The fact that you’re still living your life and want to keep improving is strong evidence that you can handle the challenging parts of diabetes because that is exactly what you’ve been doing since being diagnosed.

I have never met anyone with T1D who isn’t stronger in some way because of diabetes. You know that managing this condition day in and day out means always being on your toes. You have to make important decisions about your health, pivot your strategy regularly, and keep going, no matter what. You are already doing this.

Sometimes it may feel like you’re not doing a perfect job, and of course, there is always room for improvement. But the reality is T1D has made you stronger. You have to be resilient to survive with diabetes. The fact that you live with T1D proves you are strong. I hope you see it too.

I found this passage to be pretty relatable as someone managing multiple chronic illnesses. You may sometimes feel overburdened by your disease, but at the same time, you are made stronger by the challenges it has put you through. Maybe you’ve also become more conscientious of your health than before you were diagnosed, or it’s led you to re-prioritize your life to make space for only the things that you truly love and care about. Seeing it through this perspective doesn’t mean ignoring how hard it is to live with a disease. Instead, it’s about acknowledging how strong YOU have become in the process of managing life with a disease.

Let us know in the comments below…how has living life with a chronic illness made you stronger or more resilient?

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

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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

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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/