Do you ever feel a lump in the back of your throat or look in the mirror and see tiny, white patches or pebbles? These are tonsil stones, and for people living with lupus, they might be more common than you think. Along with traditional lupus symptoms like skin rashes, fatigue, and joint pain, MyLupusTeam members have asked others if they also get tonsil stones.

One member wrote, “Does anyone have any tonsil issues? For several years now, I’ve had painless yet unhealthy-looking tonsils with several little holes. They have tonsil stones and drain pus occasionally, but my doctor was never concerned.”

In this article, we’ll discuss what tonsil stones are, what you can do about them, and how they’re related to lupus and your overall health. For the most part, tonsil stones are harmless, but they can be bothersome if you get them often enough. Talk with your doctor about your treatment options and ways to prevent tonsil stones.

What Do Your Tonsils Do?

You’ve likely heard of tonsils before, but do you know what role they play in your health? Your tonsils belong to a specialized part of your immune system known as lymph nodes. Your lymph nodes are home to your white blood cells (WBCs) — immune cells that help fight infections and keep you healthy.

Your tonsils are areas of tissue found on each side of the back of your throat. They help filter out any bacteria and viruses that enter your body through your mouth or nose, keeping you from getting sick. They are a special part of our immune system, and researchers believe that they can help us understand better how it works.

Some people had their tonsils removed by a tonsillectomy when they were younger. This was likely because they had tonsillitis or infected, inflamed, and swollen tonsils. Most people have tonsillitis at some point in their life. Common symptoms include a very sore throat, pain while swallowing, fever, and white spots on the tonsils.

What Are Tonsil Stones?

If you’re an adult who still has tonsils, you might have had a tonsil stone at some point in your life. Your tonsils have folds or gaps known as crypts, and sometimes food, bacteria, or other debris gets stuck in them. Over time, this debris calcifies or hardens, creating little white or yellow calcium deposits that look like pebbles. Most tonsil stones are so small they can’t be seen, but sometimes they can grow large enough to be noticeable.

Several MyLupusTeam members have shared their experiences with tonsil stones also known as tonsilloliths. The primary causes of tonsilloliths are frequent tonsillitis and repeated inflammation of the tonsils’ crypts. One member wrote, “I’ve been having issues with my tonsils too. I was diagnosed with lupus in February 2018 and then started developing tonsil issues in August. They swell and I get tonsil stones all the time. It makes my voice hoarse and it hurts to swallow.”

A member also shared, “I’ve been randomly getting white pus pockets on my tonsils about once a month. I have no fever and my throat doesn’t hurt. I was wondering if anyone else has experienced this?” “I had that for quite some time years ago. I had tonsil stones. I was able to take the back of a toothbrush and pop them out. They’re horrible smelling,” replied another.

Other signs of tonsil stones include:

• Bad breath or a bad taste in your mouth
• Sore throat and trouble swallowing
• Earache
• Coughing because it feels like something is stuck in the back of your throat
• White patches on your tonsils
• Frequent throat infections that don’t seem to get better with antibiotics

What’s the Connection Between Tonsil Stones and Lupus?

With so many MyLupusTeam members sharing they’ve had tonsil stones in addition to their lupus, you might think that they’re somehow connected. Lupus is an autoimmune disease, meaning that your body’s immune system mistakes your own healthy cells and tissues as foreign invaders.

Your body creates antibodies or immune system proteins that attach to antigens (specific parts of cells) to tag them for destruction. Lupus affects several parts of your body, including your joints, kidneys, skin, and digestive system. For example, it’s common for people with lupus to have open sores or ulcers in their mouths.

However, there currently isn’t any research showing that lupus increases the risk of tonsil stones. The biggest risk factors for developing tonsil stones are having tonsils with lots of nooks and crannies for food and debris to get into and frequent tonsillitis.

Sjögren’s Syndrome, Lupus, and Tonsil Stones

If you’re living with lupus, you might notice that your mouth and/or eyes are drier than normal. These symptoms can be caused by Sjögren’s syndrome, another autoimmune disease that affects your saliva glands and tear ducts. Studies show that between 14 percent and 18 percent of people with systemic lupus erythematosus (SLE) also have Sjögren’s syndrome.

The most common symptoms of Sjögren’s syndrome are:

• Dry mouth caused by a lack of saliva
• Dry eyes
• Trouble swallowing
• Swollen saliva glands behind the jaw

Some MyLupusTeam members with both lupus and Sjögren’s syndrome have shared that they also have tonsil stones occasionally. Without enough saliva to lubricate your throat, food can become stuck — especially if you have lots of folds and pockets in your tonsils.

“Do any of you suffer from chronic dry mouth and calcium deposits in the back of the mouth and throat?” asked one member. Another replied, “Lots of us do have secondary Sjögren’s and chronic dry mouth. Are you seeing little white things in the back of your throat? Those of us with dry mouth more often get little food particles caught in the crypts in our tonsils in the back of the throat.”

Treating Tonsil Stones

For the most part, tonsil stones are annoying but harmless. If it’s large enough to make a noticeable lump in the back of your throat, you can try to push the stone out of your tonsil gently with a clean cotton swab. The Cleveland Clinic recommends avoiding using a toothbrush or your finger because you can scratch your tonsil’s delicate tissue.

You can also gargle with salt water to dislodge any tonsil stones and treat your sore throat. This helps take away your bad breath and the bad taste in your mouth. If you often get tonsil stones, try gargling with salt water after each meal to clear out any food particles that may have become stuck in your tonsils. Mix 1 teaspoon of salt into 8 ounces of warm water to help it dissolve.

Surgery for Tonsil Stones

Most people won’t need surgery to help treat their tonsil stones, but it’s an option if they’re large and causing chronic (long-term) throat or ear pain. Frequent tonsil stones can also raise your risk for tonsillitis, which may be another reason your health care provider would recommend surgery. Recent research has shown that sometimes if you have both chronic tonsillitis and an autoimmune disease, a tonsillectomy should be very helpful. However, more specific research needs to be done.

Be sure to talk to your doctor about your tonsil stone symptoms. They may refer you to an ear, nose, and throat doctor — an ENT or otolaryngologist — to talk about your options. A tonsillectomy can be done in an outpatient clinic (rather than the hospital) in a 20- to 30-minute procedure. During a tonsillectomy, your surgeon will remove both of your tonsils. Recovery from the surgery takes at least 10 days and can sometimes take up to a few weeks.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you had tonsil stones while living with lupus? How have you managed them? Share your experience in the comments below, or start a conversation by posting on your Activities page.