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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Carrie Ann Inaba Takes Leave of Absence Due to Autoimmune Diseases

Carrie Ann Inaba has said that she is taking a leave of absence from her TV hosting role to focus on her health.

Carrie Ann Inaba, TV host on CBS’ The Talk and judge on ABC’s hit show Dancing with the Stars opened up about her struggle living with autoimmune diseases and chronic illnesses on her blog, Carrie Ann Conversations.

The Emmy award-nominated TV personality said that she has been diagnosed with several different autoimmune diseases and chronic conditions over the years, including Sjogren’s Syndrome, Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis (RA), and she also has the markers for Antiphospholipid Syndrome (APS), which causes blood clots. The 53-year-old dancer and choreographer says she also struggles with fibromyalgia and spinal stenosis.

As a result of her various autoimmune conditions, Inaba has taken a leave of absence from her role on The Talk so that she can focus on her health, reports MedPage Today.

Talking about her health journey, Inaba said: “Even if we are fortunate enough to get a diagnosis, we can quickly end up with more questions than answers. Often when it comes to autoimmune conditions there is no perfect solution or clear path forward.”

Inaba continued, explaining: “Coping with autoimmune conditions can sometimes feel quite lonely. When I first got diagnosed, some encouraged me to keep my struggles to myself, but I’ve found that it’s always been better to be honest about my needs and realities than to stay silent. I believe strongly in sharing my journey, my solutions, and the things that have helped me.”

In this spirit, Inaba has shared on her blog the products that have helped her cope with her autoimmune disease symptoms – including eye dryness, mouth dryness, joint pain, fatigue, brain fog and more – so that others can benefit from these products and see if they work for them.

This isn’t the first time that Carrie Ann Inaba has opened up about her health struggles. The starlet previously posted on Instagram about how she felt ashamed of her autoimmune diseases, and wanting “…to be what people see. And people see a healthy person, from the outside.” However, confronting her health problems made Inaba reflect on who she is as a person, besides just her identity as a “sexy dancer chick.”

From all of us at Autoimmune Warrior, we want to thank Carrie Ann for opening up about her health journey as an #AutoimmuneWarrior, and raising awareness about the 80+ autoimmune diseases affecting over 23 million Americans. Because of celebrities like her, more people among the general population are learning about autoimmune conditions, and why extensive research is needed to find better treatments, and eventually, a cure.