Painful mouth ulcers: Hi, I have Lupus... - LUpus Patients Un...

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Painful mouth ulcers

Sores_1 profile image
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Hi, I have Lupus and have developed extremely sore ulcers on my tongue, pallet and back of throat.I even get sores in my upper nasal passages . Have been treated with prednisone to little avail .Anyone have anything like this ??

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Cvansidener profile image
Cvansidener

Yes mine started a couple days ago and I do think that the heat has something to do with it. I started flaring a couple weeks ago, the sun has been really intense and the weather has been more humid than usual and I have had extreme sensitivity to the sunlight...so bad I can't drive for along period of time because of the glare. I get a terrible headache sometimes migraine if I'm out to long. You are not alone out there..my dermatologist looked at the sores and said that is a lupus thing and to use camphor gel that they sell over the counter at the pharmacy to numb them, which helps but prednisone is the go to drug for us here in Hawaii as well! Best of luck, I hope you feel better soon.

creaky profile image
creaky

Yep it's a constant problem for me, if anyone has the answer please share.

I have a fresh batch of ulcers on my tongue today and the inside of my nose is also sore. I do find that keeping my mouth and nose hydrated helps a bit.

Sterimar nasal spray in my nose can help calm it down.

Cas70 profile image
Cas70

Hi - I had this too, felt like I had been chewing the inside of my mouth! 3 weeks on Hydroxychloroquine and they are long gone. Lots of fluid intake and mouth spray plus coconut oil to keep nose moist works. I bought a small humidifier for next to my bed and it really helps! Good luck Cas70

lupus-support1 profile image
lupus-support1Administrator

15 Questions - Oral Issues with Lupus

1. Explain some of the typical dental problems that may occur in people with Lupus.

"I have just been diagnosed with discoid lupus, but for 30 years have had major dental issues that I believed are just because of things I was or wasn't doing. I have been devastated with the loss of many teeth after trying to save them and consistent dental therapies. What are the major symptoms that would relate to lupus in dental and mouth health?" Lehi, UT

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.

2. I am continually getting what my doctor calls ulcers, in my mouth (on the inside cheeks and under my dentures). Is this from Lupus and how can I prevent some of these? I go to the dentist regularly. Charlotte, NC

It is impossible to tell if the lesions you describe are related to lupus or some other oral condition, as the term “ulcers” is non-specific. I would recommend you obtain a thorough work-up by your dentist to try and pin down a more specific diagnosis. Your dentist may refer you to someone more experienced to evaluate you and you may need to undergo a simple biopsy to help refine the diagnosis. Once a more defined diagnosis is established, treatment strategies can be developed to help you manage the ulcers.

3. Is there something additional that people with systemic lupus such as myself and a friend have that can help prevent our teeth from cracking, chipping, and breaking? Valparaiso, IN

Please see the comments in Q #1.To directly address your question, you should undergo a thorough evaluation by your dentist to determine the most likely causes for the problems you describe. It is unlikely that the lupus is directly causing chipping, cracking, and breaking. One or more of the following are far more frequently associated with the breaking / cracking down of teeth: defective or broken down restorations, cavities, grinding (bruxism) or clenching habits, and factitial habits such as chewing ice, hard candies, etc..

4. Do people with Lupus develop more cavities than the normal person? It seems like every 6 months at the checkup the dentist will have found at least 1 cavity. I brush well and didn't have a single cavity until the age of 33..... Then all of a sudden there has been at least 1 a year. Lupus related? Sculpture, LA

I am not aware of any literature directly linking lupus with an increased risk for developing cavities. However, please see comments in Q #1. I can only speculate that your recent increase in cavity risk is related to something as simple as a change in your dietary habits or may be related to xerostomia, which is likely either medication or disease induced.

5. I've had a series of failed root canals in the last two years resulting in the loss of those teeth. ALL of my molars are root canaled and are failing. My dentist feels my lupus and/or the medications I take for it are to a large degree responsible for this. Is there any research available on this topic? Phoenix, AZ

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.

6. Can medications and/or oral rinses affect the health of your teeth? I am 47 years old and my dentist has always described my teeth as "perfect." Not so much as a cavity in my whole life! I do, however, have some problems with receding gums and mouth ulcers, both attributed to SLE. I have been on moderate doses of Prednisone (9-20 mg) Escondido, CA

Yes, please see Q #1. Steroids, especially topical forms, are used to manage a variety of oral conditions. However, it is unlikely that the steroids are causing the problems you describe. In fact, topical steroids may be prescribed to help reduce the severity of oral ulcerations due to lupus, particularly if they are causing pain. Your receding gums may be an unfortunate aspect of aging, an altered brushing habit, or could indicate a more significant periodontal problem. You should discuss this more with your dentist.

7. Are dental implants successful in patients with SLE? I was diagnosed with SLE in 2001 and have a long history of dental issues as a result of which I have lost several teeth and remaining are very loose. I got 2 implants done last year with no complications but it seems that I will need many more in future. Is it safe to get so many implants done considering the fact that I have SLE as well as osteoporosis? My symptoms are mostly limited to joint pains and fatigue. I am currently on 5 mg prednisone, 200mg plaquenil and methotrexate. Toronto, Canada

Over the past few decades implants have become a more commonly available and promoted option to address dental needs. In many cases they offer a more “permanent” fix to a particular dental concern. However, they often represent the most expensive option and even when placed in the healthiest of patients, some will fail. There is virtually no literature specifically addressing the issue of implant placement in the lupus patient. The fact that you already had a few implants successfully placed is a likely good indicator of your being able to tolerate more if needed. If your lupus is under good medical control, the benefits of having more implants when necessary likely outweighs the risks.

I would offer two potential caveats that your dentist may have concerns about. First, chronic steroid therapy can alter your immune response and overall healing response. Second, while osteoporosis per say does not predict implant failure, how your osteoporosis is being managed may complicate your dentist’s comfort in placing implants. The most commonly prescribed drugs used to treat osteoporosis today are called bisphosphonates. These drugs act to alter bone turnover to preserve bone density. While the overall benefits of their use appear to clearly outweigh the risks, they have been associated with a recently described phenomenon called bisphosphonate associated jaw osteonecrosis. As a consequence, most dentists are very cautious in planning to place implants in a patient on bisphosphonate therapy.

8. What are the best options for inexpensive dental care when you do not have insurance? Georgia, VT

I am not the best person to answer this question, but I will offer a couple thoughts. You can check with your local & state dental societies. They may have special “free access” events targeting the underserved. My personal experience is that such events tend to focus on providing urgent type care. There may also be various church-based or community-based clinics that offer more affordable care based on documented financial need. Hope this helps.

9. I seem to always have some form of infection in my mouth. I keep getting teeth pulled; soon I will have none to chew with. Is there a special antibiotic that halts these infections? Is there anything else I might try? Lacey, NJ

There are no antibiotics that can halt dental disease. There are some topical rinses (such as chlorhexidine) that may be prescribed to help address a problem such as gingivitis. Your problem, as your describe it, could be related to the progression of unaddressed routine dental needs or may indicate the presence of an underlying systemic problem such as poorly managed diabetes. I strongly recommend you check with your dentist to determine the underlying cause of your dental problems. Once the cause or causes are determined, your dentist can develop and discuss with you the best plan to attend to your needs.

10. I had developed some mouth sores about 2 years ago. They were so bad that I could not eat anything. They are gone now but one thing that I noticed is a pulsing on my tongue and around my inner gum area. The pulsing is not painful but very annoying! I notice it pulses even more after a long day out. Phoenix, AZ

I can speculate you may have a condition commonly referred to as “burning mouth syndrome” or you may have some type neuropathic condition or something else entirely. However, as this is only speculative, I suggest you check with your dentist (please see Q #1 concerning finding a dentist).

11. I always have dry mouth; will this affect my teeth in the long run? If so what preventive methods should be taken? San Luis Obispo, CA

Yes! A chronic dry mouth adversely affects your oral health and quality of life. I’d first recommend you see your dentist to determine the causes of your dry mouth (please see Q #1 & Q #5 above). Unfortunately, some cases of oral dryness are not easily remedied. Management options for oral dryness involve several strategies:

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.

Avoid caffeine and other products that induce diuresis.

Avoid foods and drinks that cause discomfort (acidic items, hot sauce, etc.).

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.

Maintain meticulous oral hygiene and obtain regular check-ups and cleanings. In this regard, your dentist doctor will often prescribe a stronger strength fluoride gel or paste and /or antiseptic mouth rinse for you to use. Based on your overall risk, your dentist may recommend you be checked more frequently than every 6 months.

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 prescribe a sialogogue to attempt improve your salivary flow. The two most commonly prescribed agents are pilocarpine (Salagen) and cevimeline (Evoxac). These drugs work to directly stimulate your saliva glands.

12. I get horrible mouth ulcers at times (usually in conjunction with low grade fever, fatigue, etc.). What is the best way to prevent and treat them? Are they an indicator of a deeper problem, or are they a problem in and of themselves? Auxvasse, MO

Much like Q #10, anything I offer here is purely speculative. Therapy is dictated by determining the cause and the problem you describe certainly could indicate a more serious underlying problem or may indicate a condition isolated to your mouth. I suggest you check with your dentist (please see Q #1 concerning finding a dentist).

13. Is it common for lupus patients to have to have their teeth cleaned often? I must go and have my teeth cleaned every 3 months! The plaque build-up is incredible. I brush and floss several times a day because of this but it really doesn't seem to help! My teeth and gums are in good shape because of this but do you have any suggestions? Oakley, IL

Not having the privilege of knowing you as a patient, limits my ability to respond. However, even healthy patients may form plaque and calculus at rate that causes the dentist to recommend a more frequent cleaning interval. It may be that you have some oral dryness that may be contributing to your more frequent need for cleanings. Regardless, you should feel free to discuss this with your dentist.

14. 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.

15. My daughter was diagnosed with lupus two years ago at age 14 and was placed on 40 mg prednisone. She had braces on at diagnoses and kept the braces on for another year, taking prednisone the entire time. When she got the braces off, there are visible grooves in her teeth. Should we have temporarily removed the braces until she got off prednisone? We have been told that she will need an expensive cosmetic dental procedure to fill the grooves that will need to be repeated every few years. Baton Rouge, LA

It is highly unlikely that the prednisone affected your daughter’s teeth. Drug-induced alterations to tooth structure occur during tooth development, which occurs prior to eruption. On occasion, the tooth structure under an orthodontic brace may undergo some decalcification or carious activity which may be hidden from view until the braces are removed.

Not having the privilege of knowing you as a patient, limits my ability to respond. However, even healthy patients may form plaque and calculus at rate that causes the dentist to recommend a more frequent cleaning interval. It may be that you have some oral dryness that may be contributing to your more frequent need for cleanings. Regardless, you should feel free to discuss this with your dentist.

14. 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.

15. My daughter was diagnosed with lupus two years ago at age 14 and was placed on 40 mg prednisone. She had braces on at diagnoses and kept the braces on for another year, taking prednisone the entire time. When she got the braces off, there are visible grooves in her teeth. Should we have temporarily removed the braces until she got off prednisone? We have been told that she will need an expensive cosmetic dental procedure to fill the grooves that will need to be repeated every few years. Baton Rouge, LA

It is highly unlikely that the prednisone affected your daughter’s teeth. Drug-induced alterations to tooth structure occur during tooth development, which occurs prior to eruption. On occasion, the tooth structure under an orthodontic brace may undergo some decalcification or carious activity which may be hidden from view until the braces are removed.

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lupus-support1Administrator in reply to lupus-support1

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

You can find further information about Oral Issues in Lupus here:

lupus-support.org/LuPUSMB/i...

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With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

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