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/

Top 5 Must-Have Products for Dry Skin | Sjogren’s Syndrome Series

As many of my subscribers know, I have an autoimmune disease called Sjogren’s Syndrome. One of the main symptoms that Sjogren’s patients can experience when living with this chronic inflammatory condition is dry skin.

Dry skin can take on many forms in Sjogren’s patients. From cracked lips to itchy skin rashes, there’s no shortage of dry skin symptoms when it comes to Sjogren’s. For me personally, my skin became so dry that my dermatologist diagnosed me with xerosis cutis, otherwise known as abnormally dry skin. So, how do I handle living with the chronic skin dryness caused by Sjogren’s?

1. Moisturize Daily with Skin Cream

My dermatologist recommended that since my skin was so dry, that I moisturize daily with a good skin cream. She also noted that there is a difference between skin creams and lotions. According to North Star Dermatology, skin creams and lotions are both made of a mixture of water and oil. However, skin creams are thicker and heavier than lotions, since they have a higher oil content (usually a 50-50 mix of water and oil). Lotions, however, have a higher water content, making them lighter than creams. If you have extremely dry skin, you’ll want to opt for a cream rather than a lotion, since creams provide a heavier barrier for keeping your dry skin hydrated.

The brands that my dermatologist recommended were the CeraVe and Aveeno for eczema skin creams (see links below). I find that using a high-quality skin cream right after a shower can also help to lock in moisture.

CeraVe Moisturizing Cream

Aveeno Eczema Therapy Cream

2. Use A Petroleum Jelly-Based Ointment

If you’re having really extreme dryness, you may want to opt for an ointment that will stay on your skin for longer than a traditional skin cream. Most ointments are made out of petroleum jelly, a thick substance that prevents them from being immediately absorbed into your skin.

In addition to Sjogren’s, I also have the inflammatory skin condition eczema (atopic dermatitis). One of the most helpful over-the-counter treatments for my eczema was a hydrocortisone ointment from Walgreens. I know a lot of people are against using steroid-based creams like hydrocortisone, but the over-the-counter variety only has about 1% cortisone. It would help to sooth the itchiness and redness associated with eczema, and I’ve also found it useful for dryness associated with my Sjogren’s.

I now use a prescription ointment from my dermatologist which is a bit stronger than the over-the-counter variety, but I’ve linked below the over-the-counter ointment that I used to use.

Walgreens Hydrocortisone Ointment, USP 1%

3. Slap on Some Sunscreen

According to Garnier, sun exposure can further dehydrate your dry skin, since the sun’s rays will decrease moisture and essential oils from your skin’s surface. For this reason, you’ll want to use a moisturizer that also contains some SPF.

Plus, it’s important that whatever sunscreen you use, that it’s non-comedogenic if you put it on your face, meaning that it won’t clog your pores. This is essential if you tend to get acne breakouts from skincare products. The funny thing is, despite having pretty dry skin, the oily skin in the t-zone of my face never fails to break out in pimples…even at the ripe age of 28!

Living in sunny Southern California, daily sunscreen applications are practically a must. I’ve tried so many different sunscreens over the years, especially for my face, and I think my favorite so far would have to be the COOLA organic classic face sunscreen. Not only is it non-greasy, it also smells great (like a fresh cucumber scent) and provides great sun protection with SPF 50.

COOLA Organic Classic Face Sunscreen

4. Don’t Forget Your Lips

It’s no secret that if you have dry skin due to Sjogren’s or another condition, your lips have probably been victim to your lack of hydration. Dry, chapped lips aren’t just uncomfortable, they can also be painful if your lips start to crack.

I’ve personally had the misfortunate of having both dry, cracked lips, and eczema around my mouth- a downright awful combination. Below, I’ve linked to my favorite favorite brands of chapstick – Burt’s Bees and Evolution of Smooth (EOS) – which I’ve used to relieve dry skin on my lips. You can also find chapstick with SPF, if you’re looking for extra sun protection.

Burt’s Bees Ultra Conditioning Lip Balm

EOS Organic Shea Lip Balm – Strawberry Sorbet

5. Humidify Your Environment

If you live in a dry environment, like a hot desert, or even a place that has extremely dry, cold winters, you’ll know what kind of damage it can wreck on your dry skin.

One year when I was 15, I spent the entire fall and winter in Canada, then spent the summer months in New Zealand (where it was technically the winter, since it was in the southern hemisphere). The 10-month long dry and cold fall/winter I had that year led me to break out in eczema rashes all over my body and my skin actually began to peel off in some places, to the point where I was shedding like I had dandruff all over my body!

If you’ve experienced anything similar, I would recommend investing in a solid humidifier that you can use to add moisture to the air in your dry environment. A humidifier is easy to use; all you need to do is refill it with water and plug it into a wall outlet, and a light mist will fill your room, making your dry skin more comfortable. They come in various sizes, so you can humidify a large room, or even a small office (just look for a ‘desk humidifier’). Below is the one that I use to humidify my home office, which is where I spend my time the majority of the week.

Crane Drop Ultrasonic Humidifier

Those are the top 5 must-have products that I would recommend as a Sjogren’s Syndrome and eczema patient with dry skin. Do you have a condition that causes dry skin? If so, what have you found has worked best for you? Let us know in the comments below!

Berkeley Alumni Create Startup Focused on Autoimmune Disease Therapies

Geo Guillen, Marco Lobba, and Matthew Francis, the co-founders of autoimmune disease biotechnology company Catena Biosciences. Image courtesy of Berkeley News.

Marco Lobba was pursuing his PhD in Chemistry at UC Berkeley when he and his lab partners made a discovery. He had been studying the modification of proteins when he happened upon a technique called “oxidative coupling,” which modifies proteins so that they can be fused together. He and his partners also found that the enzyme tyrosinase could be used to make oxidative coupling much faster and more efficient. Tyrosinase is a naturally-occurring enzyme, found in fruits and vegetables, and is responsible for turning apples and avocadoes brown as they ripen.

The accelerated oxidative coupling method could be used to fuse proteins together, faster and more selectively, than any other method currently in use. This opens the door to treating autoimmune diseases, which attack the body by convincing a person’s antibodies to attack their own healthy cells. Using this discovery, scientists can attach ‘safe’ signals to healthy cells, helping the body’s immune system identify its own cells and refrain from attacking them.

“Think of it almost like Pavlov’s dogs,” explains Lobba. “Or tricking children into eating their vegetables by covering them in cheese,” he elaborated. “If you present the immune system with something it likes — at the same time as something it is attacking — it starts to associate that target as a good thing.”

Lobba presented his discovery during a course on entrepreneurship at UC Berkeley’s Haas School of Business. During the presentation, fellow classmate Geo Guillen saw how passionate he was about his research, and the value of his discovery in the treatment of autoimmune disease. It was this purpose that drove the pair to work together alongside Berkeley Chemistry professor, Matthew Francis, to co-found a startup called Catena Biosciences, focused on making autoimmune disease therapies.

Their startup launched remotely during the COVID-19 pandemic, at a time when biotechnology and pharmaceutical companies have come into focus for the role their organizations play in helping to keep our communities healthy and thriving. The startup has been valued at $10 million for its innovative technology and ground-breaking research.

Guillen commented on his company’s founding, saying: “We identified that the autoimmune market is one that is particularly ripe for disruption because a lot of the approaches to treating autoimmune disease focus on the symptoms, instead of the root cause. It’s a pretty large, untapped market.”

Catena Biosciences is aiming to conduct pre-clinical trials by the end of August 2021, which will test the impact of their therapeutics on autoimmune disease reactions in patients. Next month, the company will be looking to raise more funds for their startup to help them commercialize the treatment. The founders’ hope is that they can have a positive impact on those living with autoimmune diseases, like multiple sclerosis, lupus, and Type 1 diabetes.

The company has been awarded the 2021 Berkeley Big Ideas Award for their entrepreneurial endeavors. To learn more about Catena Biosciences, read about the company on the Berkeley News blog.