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Why I Didn't "Grin and Bear It" When I Started to Lose My Teeth Due to Lupus!

Updated on November 17, 2017
Gina Welds-Hulse profile image

Chronic illness warrior and natural health coach and advocate, Gina helps others thrive beyond the challenges of chronic illness.

What is lupus?

What is lupus?

Lupus is an autoimmune disease or a disease that starts because of an abnormal functioning of your immune system. You can read more about lupus and my personal story here.

The disease is not acquired from another person, and it cannot be spread to another individual, even through bodily contact. It is your own body recognizing part of itself as foreign. Your immune system defenses attack various cells in your organs. Specifically, it is the antibodies that protect you from other infectious agents. The antibodies attack the nuclei of your cells, which then causes the symptoms to occur. The medical term for the disease is systemic lupus erythematosus with a systemic (organs) form and a cutaneous, or (skin) form. Symptoms of this disease can overlap with those of other autoimmune diseases and can include a skin rash over the nose and cheeks, which is called a butterfly rash. A rash can appear on other areas of the skin that are consistently exposed to sunlight. Other symptoms include fatigue, swollen joints, fever, hair loss and inflammation of organs including the heart and kidneys.

Oral ulcers manifesting in lupus patient

Oral ulcers manifesting in lupus patient
Oral ulcers manifesting in lupus patient

Lupus can have an effect on oral health.

Up to 40% of people with Lupus will experience oral manifestations of the disease, such as sores or lesions that last for quite some time. These lesions may or not be painful, but you should let your rheumatologist or dentist know about them when they flare up. Lesions are an indication that the disease is in an active state, and the oral symptoms provide a legitimate warning sign that you should take note of.

The human mouth and bacteria

The Human Mouth and Bacteria

The mouth is a hotbed of activity for bacteria, many of which can cause problems to a person’s overall health. “In our mouths we have 500 different types of bacteria, at least 11 of which can cause periodontal disease,” says Daniel Klein, D.D.S., a dentist in Scottsdale, AZ. “Lupus is tied to a variety of oral health concerns. But lupus only starts the problem. It can be elevated highly because of poor oral hygiene.”

Direct manifestations of lupus in oral health

The direct manifestations of lupus affecting the mouth are generally limited to nonspecific oral ulcerations, whitish plaques and striations that have been variably described in the literature

These ulcerations and plaques are often not painful and may mimic numerous other conditions such as lichen planus and recurrent aphthous ulcers (canker sores). Commonly affected sites in the mouth include the buccal mucosa, the gingival, the palate, and the lip vermilion. Oral lesions attributable to lupus are crudely estimated to affect about 5% - 40% of lupus patients. Lupus does not appear to directly affect the teeth and I am aware of no validated literature demonstrating an increase in dental decay risk directly related to lupus. However, two other factors may complicate the oral health of the lupus patient.

First, many patients with lupus will also have secondary Sjögren’s syndrome which results in reduced saliva and tear production, and manifests as dryness affecting the mouth and eyes. Reduced salivary flow increases one’s risk of a variety of oral maladies such as oral infection (cavities, gum disease, fungal infection), along with difficulty with speaking, eating, and swallowing.

Second, many of the medications prescribed to manage lupus have adverse effects that can affect the mouth. Prescribed steroids suppress the immune system and can increase one’s risk of an oral fungal infection and poor wound healing. Drugs such as hydroxychloroquine (Plaquenil) and methotrexate may themselves cause oral sores or ulcerations. Over 400 medications (conservative number) result in some degree of oral dryness (xerostomia) which worsens the previously described Sjögren’s syndrome.

The above background information aside, I would agree that the dental problems you describe are most likely not related to your recently diagnosed lupus. However, I encourage you to continue to work with a dentist you are comfortable with to address your dental needs. My experience is that most lupus patients can be safely and successfully treated by an experienced dentist. If you conclude you are not comfortable with your current dentist, regardless the reason, you may need to find another provider. I consider word of mouth from someone you trust as the best recommendation. Other options include checking with your local dental society (let them know of your circumstances) or if there is a dental school or hospital-based dental service near you, you may consider checking there. Finally, some of the professional dental web sites may have “find a doctor” option. Ultimately I trust there are dentists in your community who can address your needs; it is just a matter of making the connection.

The beginnings of losing my natural teeth.....and my determination to do what it took to preserve what I had left

Lupus is a very mysterious illness that does not affect all "lupies" the same. However, as I have researched and read various articles on the internet and through various lupus awareness groups, and talked with our lupus patients, dental problems can be very common.

As I read various articles about lupus and dental issues, my first thought was I thought was "that won't happen to me"! I'll make sure it didn't. Well, it did. Accidentally chipping a tooth was just the first sign that my teeth were weakening, but I kept thinking that it was normal. People chip teeth eating almonds all the time. However, this was the real beginning and realization that lupus was claiming another piece of my body. After visiting my dentist, he confirmed that lupus (or the effects of medications I was taking) was in fact damaging my teeth. No one is really sure what damages the teeth...medicines or lupus. It is speculated that the bones are weakened, gums are damaged from the medications, which results in tooth loss

It turns out that I also have TMJ. I knew that for years, but my previous dentist did not seem to think that was important to treat. I eventually got a night guard to protect my teeth from the grinding I was doing at night.

Lupus takes away so much already, now I was losing my smile too??? Hell, no!! I was not going to let that happen!

This picture was taken after my gums spontaneously started to bleed.
This picture was taken after my gums spontaneously started to bleed. | Source
Oral ulcers are just one of the ways that lupus manifests itself.
Oral ulcers are just one of the ways that lupus manifests itself.

My recent visits to my dentist

I was surprised to learn from my dentist a few years ago that my teeth had visible signs of weakness. At the time it had only been a few months since I had been diagnosed with lupus, but I had been on a few medications for different diagnoses, including heart and lungs.

I advised him that I had been taking medications for lupus due to my recent diagnosis, and immediately he understood, and began a protocol that I stick to today. The beginning was more frequent visits to the dentist....every 3-4 months, rather than the often recommended every 6 months for a cleaning. I had not been told that lupus could affect my oral health, until that point. I began to get really nervous because oral health was already a challenge due to other health issues. I didn't want lupus to begin to affect my teeth, also.....but it already had.

Is there anything it doesn’t affect? Do I have to worry about my teeth too? Apparently, yes.

My dentist had found dry mouth, lack of saliva, swollen gums, even though I had no visible signs or gum disease (apart from the puffy gums). My teeth would bleed very easily.

Several months went by, and teeth would spontaneously break. At other times my teeth would feel so loose as if I could just pluck them from the gums. I was freaking out. I developed ulcers in my mouth...not just one, but multiple. If you have ever had a canker sore, you know how painful those are. Imagine having multiples of those!! Yeah...you get the picture. I even developed some in my nose....but that is another story.

My story goes on to where I had to get some pulled. I had some root canals done. Those, in themselves, have their own related issues. I had to get a bridge after some teeth fell out, or had to be pulled out due to breakage. My story does have a good ending, though, at least right now....and I choose to remain positive that I am somehow beating the oral issues relating to lupus.

It is believed that many of the medications that are used to treat lupus often contribute to the oral conditions experienced by lupus patients.
It is believed that many of the medications that are used to treat lupus often contribute to the oral conditions experienced by lupus patients.
Lichen planus in lupus patient
Lichen planus in lupus patient

Lack of research relating to exactly how lupus affects the mouth.

It is believed that lupus does not have a primary link with gingivitis and periodontitis. It would have a secondary link because of the drugs side effects such as xerostomia. The same goes for various oral infections such a thrush (a fungal infection). This is frequent because of the immunosuppresor drugs and the prednisone. However, lupus does have a primary link with lichen planus, a white spider web-like lesions on the inside cheeks.

Unfortunately, research directly addressing the oral problems of the lupus patient is woefully lacking. Lupus does not appear to directly affect the teeth, but many of the prescribed medications may lead to xerostomia. There is ample research addressing the impacts of xerostomia on overall oral health and quality of life. Most of this research has been focused on the post head and neck radiation therapy patient cohort. Such patients tend to represent the extreme when it comes to the potential devastation associated with oral dryness. Many professional organizations such as the American Dental Association, the American Academy of Oral Medicine, the American Cancer Society, the National Institute of Dental and Craniofacial Research (just to name a few) post concise information for the patient concerning xerostomia and management options.

Xerostomia and the importance of saliva

https://en.wikipedia.org/wiki/Xerostomia
https://en.wikipedia.org/wiki/Xerostomia

Xerostomia, Lupus and The Importance Of Saliva

Termed “xerostomia,” the dry mouth often associated with lupus can be caused by medications, but also by an autoimmune condition called secondary Sjogren’s syndrome. (It receives the designation of primary Sjogren’s when it occurs by itself; secondary, when it occurs with another disease such as lupus.)

Among many other harmful health effects, Sjogren’s affects the moisture-secreting glands in the eyes and mouth. “Those who have dry mouth develop high levels of acid in the mouth, because of the lack of saliva,” Klein says. Under attack from the acid, the teeth decay rapidly.

Klein recommends, “You should also keep up with your dentist.” Those with lupus who have periodontal disease need to visit their dentist more often, approximately every three months, he says. “If periodontal disease isn’t present, make sure you make and keep appointments every six months.”

Finding the right dentist—one who will partner with you in your oral health care—is essential. “Finding a dentist who will work with you is so important. A lot of dentists won’t touch someone with lupus,” says Ellen Illsley, 53, of Phoenix, one of Klein’s patients.


Antibiotics before oral treatment

Antibiotics are usually prescribed before oral treatment for anyone who has lupus or other autoimmune disease.  It's also done in cases of those with heart and lung issues.
Antibiotics are usually prescribed before oral treatment for anyone who has lupus or other autoimmune disease. It's also done in cases of those with heart and lung issues.

Antibiotics prescribed before dental work

All my dental professionals insist on antibiotics before I have work done. Does this really help enough to risk being exposed to extra antibiotics? I am very affected by antibiotics. The Colony, TX

Problems affecting the heart are commonly observed in the lupus patient, but these only rarely result in serious dysfunction. Many lupus patients are believed to have a condition referred to as Libman-Sacks endocarditis, which may be associated with a moderately increased risk of developing infective endocarditis. In the past many authorities recommended that lupus patients be prescribed antimicrobial prophylaxis prior to undergoing dental care. However, validated reports demonstrating an actual linkage between dental care and the development of infective endocarditis are lacking. As a consequence the most recently published guidelines from the American Heart Association addressing the issue of preventing infective endocarditis no longer consider lupus per say as a sufficient reason to need antimicrobial prophylaxis prior to undergoing dental care. You should check with your dentist to determine if there are other reasons in your health history underlying the necessity for antimicrobial prophylaxis.



A Healthy Mouth Is A Gateway To A Healthy Body

The health of your mouth can be a sign of your body’s health. Mouth problems are not just cavities, toothaches, and crooked or stained teeth. Many diseases, such as diabetes, heart disease, HIV, cancer, and some eating disorders are linked with oral health problems (source).

Chronic inflammation in your mouth can allow bacteria and plaque to enter the bloodstream, which can lead to more inflammation in other parts of your body, such as the heart.

Studies show three ways oral disease can affect a person’s health, according to Klein’s Web site:

  • Bacteria from the gums can enter the saliva and may be inhaled into the lungs, which can cause pneumonia or pulmonary infection.
  • Bacteria can enter the circulatory system through the gums and travel around the body, contributing to existing disease processes or causing secondary infections.
  • Inflammation associated with gum disease may stimulate inflammation in other parts of the body or complicate other diseases, such as cardiovascular disease, kidney disease, diabetes, or certain forms of cancer.
  • Scientists have also found traces of gum bacteria in the knees of people with rheumatoid arthritis and osteoarthritis. The study, published in the Journal of Clinical Rheumatology, adds more evidence of the link between poor oral health and poor health in general.

The Oral Heath and Body Connection

Source

Lupus and Regular Dental Care

Although, lupus did damage my teeth a great deal, I managed to stop it in its tracks with my herbal remedies, as well as frequent visits to the dentist.  I have not had an oral ulcer in several years, and bleeding gums have been reduced drastically.
Although, lupus did damage my teeth a great deal, I managed to stop it in its tracks with my herbal remedies, as well as frequent visits to the dentist. I have not had an oral ulcer in several years, and bleeding gums have been reduced drastically. | Source

Make oral health a priority!

Once I made my teeth and gums a priority, my problems decreased. You just have to put your mind to it.

We often take our oral health for granted. Good oral health, however, enhances our ability to speak, smile, smell, taste, touch, chew, swallow, and convey our emotions through facial expressions. All of these things have a big impact on how we perform at school, work or in social situations. And they all have an influential role in quality of life.

Herbal tips for dealing with oral ulcers

One of the products that I use regularly is a mouthwash made from aloe vera gel, witch hazel and water, combined with different essential oils such as clove, thieves and peppermint. I also include baking soda in this blend. There are other recipes online that you can try to see what works for you.

Oil pulling is also a weapon in my arsenal against lupus. If you have not started oil-pulling, why not. You can read more about oil pulling and my personal experiences with it here: http://hubpages.com/health/Oil-Pulling-Ayurvedic-Healing-Remedy

I cannot tell you the last time I used regular toothpaste. I started making my own, and am very happy with the results. Check out this article for more information on the toxins that can be found in toothpaste and why you should be making your own toothpaste: http://hubpages.com/health/My-Homemade-Tooth-Powder-Recipe-and-Why-You-Should-Make-Your-Own

Other tips for oral health with lupus

Over-the-counter products include a variety of mouth moisturizers, gels, sprays, and specialized mouthwashes. Talk to your dentist, pharmacist, or rheumatologist about the different brands. Try to get natural products, if possible.

  • Get regular dental checkups (it may be more often than you think!)
  • Chew your food well.
  • Eat foods that require lots of chewing or provide moisture.
  • Scrape your tongue. Do not brush it.
  • Ditch the toxic oral care products you have.
  • Get rid of your amalgam fillings.
  • Use a lubricating mouthwash.
  • Manage oral dryness:
  1. Maintain hydration (sip water, ensure adequate overall fluid intake). Several over-the-counter products are available that may improve your comfort. These include alcohol-free mouthwashes, rinses, gels, sprays, and numerous salivary substitutes. You should considering trying several to determine if one or more works better for you.
  2. Avoid caffeine and other products that induce diuresis.
  3. Avoid foods and drinks that cause discomfort (acidic items, hot sauce, etc.).
  4. Avoid sugary products, which promote oral infection such as caries. Do use products that contain Xylitol (a false sugar that cannot be used by the caries-inducing bacteria in your mouth). You need to check the product label to ensure Xylitol is the first and only sugar listed.
  5. Maintain meticulous oral hygiene and obtain regular check-ups and cleanings.


When your saliva production is cut off, it can affect your ease in talking, chewing and swallowing, but of more concern is that saliva serves as a natural cavity-fighter by washing away food particles, plaque and working as a buffer to the acids from certain foods. Essentially, it is important to a healthy mouth, forming a protective barrier around your teeth and protecting gums from infection and allowing your taste buds to function properly.

Following the above recommendations are at times all that is necessary to provide you sufficient comfort. However, if you continue to have problems with your dry mouth, your doctor or dentist may recommend a prescription drug to stimulate saliva flow. This is usually a last resort. The two most commonly prescribed agents are pilocarpine (Salagen) and cevimeline (Evoxac).

Toxic oral products

There are so many toxic items in many toothpastes and oral products.
There are so many toxic items in many toothpastes and oral products.

Toxic oral products, and natural alternatives

Asking you to stop using your prescription medications that you are taking for your particular disease is not what I am suggesting here. Do that only under the care and suggestion/recommendation of your Dentist and/or Physicians.

Floss may contain toxic chemicals so switch to a natural floss.

Alcohol and other additives in mouthwash are linked to throat cancer (1.) among other issues. If you have a sore in your mouth, are prone to periodontal disease or just need to freshen your breath, rinse with warm water and a tsp. of high quality salt. I also make my own mouthwash. There are so many on the market.

Fluoride in toothpaste is linked to kidney disease, cognitive damage, thyroid dysfunction, bone cancer and so many more. Switch to an all natural paste or make your own with equal parts coconut oil, salt, bentonite clay (You can add a few drops of peppermint essential oil, xylitol and/or organic stevia for taste.) I have also posted a link to my own natural toothpaste recipe that you can try.

What's your oral experience with lupus or autoimmune illness?

What's your oral experience with lupus or autoimmune illness?

See results

What does the current research say about oral health and autoimmune diseases, including RA, Lupus, Sjogren's, Scleroderma, and MS? Find out as Dr. Sanders, Foun

A final word...

Communication, self-examination and prevention are the keys to controlling dental problems for the lupus patient. Lupus patients have specific dental problems because of the disease process and the medications needed to control lupus symptoms.

Visit the dentist at regular intervals, usually every two to six months, and inform him about current and past medical history. Your dentist should also be supplied with a complete list of medications, the dosage and any side effects. Also keep your physician aware of any dental problems and any proposed treatment.

Get into the habit of regular self-examination of your mouth. Report any of the following to your dentist:

1. Bleeding gums: Gingiva bleeds on eating or brushing teeth, or bleeds without any obvious cause.

2. Swollen gums: Enlarged gingiva is not bound tightly around each tooth.

3. Red Gums: Gingiva is red in color. Dark colored gingiva due to naturally occurring melanin (the substance which colors the gums) is not an indication of inflammation.

4. Sensitive gums: Gingiva that is painful to brushing. Untreated gingivitis can progress into the tissues under the gingiva and cause the bone that supports the teeth to become weakened and resorb.

5. Cracked teeth

6. Loose teeth

7. Oral ulcers

8. Teeth sensitivity

You can learn to keep dental problems under control with preventive maintenance.

I don't know about you, but I love a beautiful smile, and I try very hard on a daily basis to maintain my smile and pearly whites, despite lupus!

© 2016 Gina Welds Hulse

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