A doctor checks out the arm of an adult lupus patient with hidradenitis suppurativa

Hidradenitis Suppurativa and Lupus

Have you ever heard of Hidradenitis suppurativa? It is a chronic skin disease that causes painful, boil-like lumps that form under the skin and often secrete pus and blood. Boils that happen over and over again might lead to an infection, according to Rarediseases.org. Carbuncles are when boils happen in the same area.1

When I was growing up, I saw my mom get boils frequently. Sometimes, she had to go to the ER and have them cut and drained. She was given pain meds and antibiotics. She was told the boils had to heal on their own. At first, I did not understand. That was until I was diagnosed with lupus.

Hidradenitis suppurativa and lupus

I developed many other skin problems throughout my body during my second kidney failure. I experienced erupted blood clots. In hindsight, I know that it was a boil from under my skin that eroded out. I have had boils on my lips, arms, and vaginal area. Do not worry, ladies. It is common to develop boils in private areas. Sometimes, hidradenitis suppurativa boils appear on the inner thigh area. I experienced phases in which my skin would peel like a new baby's bottom. The thing that I hate is that my doctor did not make me feel very good about them. There was no reassurance from my doctor whatsoever.

My doctor would say, "it will go down on its own," and "leave it alone." Well, I got more in that area, and they still tell you to leave it alone. "It will go down on its own." I am like, "how long will that be? Because it has been more than a month." In some places, the healthcare system is all about money and not the care of its patients, making it harder for people to get the proper healthcare. So, I did a couple of things, like changing the soap I bathe my body with to a more sensitive soap. I also tried a healthy juice detox to remove all the toxins from my body. This helped get my body on a healthier track.

Tips for managing hidradenitis suppurativa and lupus

There are several ways people living with HS and lupus can manage their symptoms, become their own best advocates, and keep track of bad days, including:

  • Be mindful to keep track of time so you can inform your doctor of how long it has been since you have been having these problems with your body.
  • Take notice of symptoms that appear after using scented products. I experienced a big boil on my inner thigh after using Bath & Body Works body wash.
  • Use a journal, take pictures, or gather proof of your symptoms.
  • Be prepared to undergo procedures and tests.
  • Stand up for yourself. Ask your doctor why they are running a particular test.

How have you managed the symptoms of hidradenitis suppurativa and lupus? Is there anything you do differently? Did you find this article helpful? Let me know in the comments below.

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