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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Study Finds Link Between Dairy Consumption and Multiple Sclerosis (MS)

Is there a link between cow's milk and autoimmune disease like multiple sclerosis (MS)?
Could there be a link between the consumption of dairy products and multiple sclerosis (MS)? A new study from the University of Bonn sheds light on that question. Image courtesy of Health Europa.

A new study from the University of Bonn in Germany has revealed a link between the consumption of dairy products and multiple sclerosis (MS), reports Science Daily.

The researcher who led the study, Stefanie Kürten, a professor or neuroanatomy at the University Hospital Bonn, is considered to be an expert on MS, an autoimmune disease that often has debilitating and disabling symptoms. Kürten says it was her patients themselves that prompted her theory that there could be a link between the consumption of dairy products and MS symptoms.

“We hear again and again from sufferers that they feel worse when they consume milk, cottage cheese, or yogurt,” Kürten explained. “[So] we injected mice with different proteins from cow’s milk. We wanted to find out if there was a protein that they were responding to with symptoms of disease,” she said.

The myelin sheath of healthy mice who do not have demyelinating disease, as shown under a microscope.
In healthy mice, the myelin sheath (black) fits snugly as a compact layer around nerve fibers. Image courtesy of Prof. Kürten/the University of Bonn.

Her team’s research had some interesting results: when they administered the cow’s milk protein casein to mice, together with an effect enhancer, the mice went on to develop neurological disorders. A microscopic look at the mice’s nerve fibers showed damage to the myelin sheath, which is the insulating layer that gets damaged by the body’s immune response in patients with MS.

Rittika Chunder, a postdoctoral fellow in Professor Kürten’s research team, explains: “We suspected that the reason [for the damage] was a misdirected immune response, similar to that seen in MS patients.” “The body’s defenses actually attack the casein, but in the process they also destroy proteins involved in the formation of myelin.”

The myelin sheath of mice injected with casein is looser, as shown under a microscope.
In mice injected with casein, the structure of the myelin sheath loosens, and sometimes is missing altogether. Image courtesy of Prof. Kürten/the University of Bonn.

So why would one’s body attack the casein, the protein found in milk, to begin with? The researchers theorize that presumably, the multiple sclerosis patients studied developed an allergy to casein at some point in their lives as a result of consuming milk. Then, the immune system mistook a protein called MAG, which is important for myelin production, with casein.

“We compared casein to different molecules that are important for myelin production,” Chunder explained. “In the process, we came across a protein called MAG. It looks markedly similar to casein in some respects – so much so that antibodies to casein were also active against MAG in the lab animals.”

So, if you have MS, should you avoid milk and other dairy products altogether? Not necessarily, say the researchers, as this only affects MS patients who are allergic to cow’s milk casein.

“We are currently developing a self-test with which affected individuals can check whether they carry corresponding antibodies,” said Kürten. “At least this subgroup should refrain from consuming milk, yogurt, or cottage cheese.”

Another multiple sclerosis study out of Harvard University has pointed to the Epstein-Barr virus being the trigger for the demyelinating autoimmune disease. And, the MS Society of Canada has published vitamin D recommendations, due to the link between vitamin D deficiency and MS, demonstrating that there isn’t necessarily one catch-all cause of MS.

Still, Kürten’s research has opened an interesting conversation for further studies related to the link between diet and autoimmune disease – and many leading physicians and scientists believe that there is, in fact, a link. Dr. Terry Wahls, a physician who has MS herself, published a book called The Wahls Protocol about how she used Paleo eating principals to put her MS symptoms into remission.

For all of our readers with multiple sclerosis: what do you think about the new research about the link between dairy and MS? Do you follow a certain diet to control your MS symptoms? Let us know in the comments below!

5-Year-Old Diagnosed with Rare Autoimmune Disease to Undergo Bone Marrow Transplant

Paige Neale is a lively 5-year-old girl living with a rare and debilitating autoimmune disease. Image courtesy of Fox News.

5-year-old Paige Neale of Maryland has an autoimmune disease so rare, scientists believe that there are only 100 people on the planet who have ever had it.

The disease is called lipopolysaccharide-responsive and beige-like anchor protein deficiency, or LRBA deficiency for short. The autoimmune disease causes Paige’s body to attack her joints and internal organs, like her stomach and lungs. Paige was diagnosed with the rare autoimmune disease when her parents noticed that she was getting sick a lot more often than her fellow peers her age, including suffering from swollen joints and various GI issues.

Commenting on his daughter’s diagnosis, Mike Neale said: “It’s such a tough diagnosis because you don’t know what to expect…what laid ahead for her, and what do we do next?”

According to the National Institute of Allergy and Infectious Diseases, the disease is caused by a genetic mutation in the LRBA gene. Patients with the condition are highly susceptible to infections, especially of the upper respiratory tract. LRBA deficiency can also cause various symptoms, including poor blood clotting, anemia, weakness, fatigue, joint pain, stiffness, and eye inflammation (uveitis). It can also make patients more susceptible to developing other autoimmune conditions, such as vitiligo, psoriasis, and type 1 diabetes, which cause additional symptoms as well.

For her part, Paige was also diagnosed with the autoimmune condition juvenile rheumatoid arthritis in addition to LRBA deficiency. To keep her alive, Paige receives bi-weekly shots that cost thousands of dollars, but a new procedure is giving Paige’s family hope for the future. Their little girl is to receive a bone marrow transplant in April from her 3-year-old sister, who happens to be a 100% match.

“Right now you look at her, and she looks like a completely healthy five-year-old girl,” said her father Mike. He continued, “We tend to forget how sick she was leading up to that, so we question ourselves: Should we be putting her through this bone marrow transplant that is going to destroy her immune system and make her really sick?”

If the procedure is successful, however, Paige will no longer need to get bi-weekly injections, and she’ll be able to go on to lead a normal life – an end result that her father says is the ultimate goal. Paige enjoys skiing and horseback riding – activities that have given her and her family a sense of normalcy during the COVID-19 pandemic, and throughout her vigorous treatment regimen.

To follow along with Paige’s heartwarming story, check out the Pray 4 Paige Facebook Group.