Do you ever feel uncomfortably thirsty, no matter how much water you drink? “I’ve been extremely thirsty and have been having frequent dry mouth this whole week! I also feel like it’s giving me stinky breath,” one MyLupusTeam member shared. “Anyone else? Is this normal?”
Lupus is an autoimmune disorder in which your immune system attacks your organs and tissues, which can lead to various symptoms including xerostomia (dry mouth) and thirst. Living with lupus increases a person’s chances of developing other conditions, or comorbidities, that can also cause these symptoms.
In this article, we will explore potential reasons why you might be experiencing extreme thirst while living with lupus, and what you can do about it.
Following are several potential causes of thirstiness for people living with lupus. Ultimately, your doctor is best equipped to identify why you may be feeling thirstier than usual and to recommend ways to manage the symptom.
About 10 percent of people living with lupus are concurrently living with Sjögren’s syndrome, another autoimmune disorder. In a conversation about dry mouth, one member said, “Sjogren’s started with me this way.”
Sjögren’s causes inflammation in certain glands, which can reduce the amount of tears and saliva your body produces. This, in turn, can lead to dry eyes and dry mouth. It is a long-term condition that’s most common for people between the ages of 40 and 60, and about 90 percent of people with Sjögren’s are women, according to NHS Inform.
Scientists aren’t sure what causes Sjögren’s syndrome, though researchers have found that genetics, environmental factors, and perhaps hormonal factors play a role. It has also been found in high prevalence among people living with lupus and rheumatoid arthritis. When it appears as a comorbidity to another connective tissue disease, it is called secondary Sjögren’s.
Diagnosing Sjögren’s syndrome may include a blood test of certain antibodies, including those that attack the thyroid. Your doctor may also suggest a biopsy of the salivary glands, lips, or tear gland. This entails removing a small sample for examination under a microscope. Some specialized imaging tests are also available for diagnosing.
One MyLupusTeam member shared their thoughts on dry mouth and extreme thirst: “I think it’s a combination of several factors, including our lupus intolerance to even slight heat.”
Lupus is known to cause sensitivity to sunlight and heat. It is possible that you may be extra thirsty during hot and sunny days, due to your body’s struggle to regulate its temperature. This may be accompanied by a low-grade fever. However, if your dry mouth persists long term despite your being hydrated, there may be other potential causes.
The kidney is an organ that regulates the reabsorption and excretion of water, salt, and other contents. Systemic lupus erythematosus — the most common form of lupus — can cause kidney damage, a complication called lupus nephritis. In lupus nephritis, lupus antibodies damage parts of the kidney responsible for filtering out waste.
Symptoms of lupus nephritis include changes in the appearance of your urine, swelling of your hands and feet, and hypertension (high blood pressure). Excessive thirst is a symptom of kidney disease. If you are experiencing these symptoms, it is important to speak to your doctor to get proper kidney function testing and treatment to prevent potential kidney damage.
Pharmaceuticals that commonly cause extreme thirst include lithium, antipsychotic drugs, and diuretics (water pills). Many classes of medications also cause dry mouth, including:
Some of these drugs are used in treating lupus nephritis, including diuretics — such as furosemide (Lasix) — and corticosteroids, such as dexamethasone. Others aren’t commonly prescribed to people living with lupus, but you may be taking them for other conditions.
Diseases unrelated to lupus, such as diabetes, may also be the cause of your extreme thirst while living with lupus. “Please ensure your doctor has checked your blood sugar since the severe thirstiness started, as high sugars/diabetes can also make you thirsty,” a MyLupusTeamMember recommended. “We are more prone to diabetes due to steroid use.”
Diabetes impairs your body’s ability to regulate your glucose (blood sugar) levels. Other symptoms of diabetes include frequent urination, fatigue, and sudden weight loss. If you’re experiencing these symptoms and think you might be at risk for diabetes, talk to a health care professional about getting tested.
Following are some ways to reduce discomfort associated with extreme thirst and dry mouth.
Given that there may be multiple causes for thirst and dry mouth, determining what’s behind your symptoms is essential. Speaking with your doctor is an important first step. They can review your symptoms and run additional tests, if necessary, to figure out what’s going on.
If you’re on a medication you think may be causing your symptoms, speak to your doctor about changing your dosage or switching to an alternative medication. Never stop taking a drug without your rheumatology provider’s permission.
A lack of saliva can lead to an uncomfortably dry mouth. You can increase your salivation by rinsing your mouth out with cold water, using mouthwash, sucking on ice, and chewing sugarless gum. One member said, “I always try to keep hard candy on me at all times! Sugar-free, of course.”
Sugary gum and candy with dry mouth create havoc with your dental health.
Most Americans don’t get enough fluids. The U.S. National Academy of Sciences, Engineering, and Medicines recommends that men drink about 15.5 cups (3.7 liters) of liquid per day and women drink around 11.5 cups (2.7 liters).
This fluid can include water and other beverages, and you can also get fluids from certain foods, including various fruits and vegetables. Keep in mind that some beverages, such as alcohol, are dehydrating. You may need to drink more fluid if you exercise, live in a hot environment, sweat a lot, or are pregnant. “Always make sure to stay hydrated,” one member advised.
Importantly, if you’re living with lupus nephritis, you should discuss how much fluid you should consume each day with your health care provider. You’ll need to balance the amount of water and electrolytes you consume to prevent fluid overload and dehydration. This is especially applicable to people who’ve already developed renal (kidney) dysfunction.
Avoid foods that are salty, acidic, or dry, which may increase your thirst and need for additional hydration.
In general, consuming nutritious meals can help you heal better while you’re undergoing treatment. A healthy diet also can help you preserve the body’s homeostasis (balance of bodily systems), increase periods of remission (periods when you don’t have symptoms), prevent medication side effects, and improve your overall well-being.
Over-the-counter artificial saliva products may help with dry mouth. These products come in many forms, including gels, gums, toothpaste, and aerosol products. One member shared, “I use a product for dry mouth. They have a spray, toothpaste, and mouthwash; that might help.”
If your dry mouth is severe and home remedies are not helping, ask your doctor about prescription medications that can increase saliva production. One such prescription drug is pilocarpine (Salagen).
As one MyLupusTeam member shared, “Please tell your doctor about this at your next visit. They need to know, and perhaps can find the main cause and solution by talking with you.”
Your rheumatologist should be made aware of any lupus symptoms you are experiencing, including extreme thirst and dry mouth. They can help figure out the underlying cause of this symptom and suggest medical advice, treatment, and lifestyle changes to manage it in the future.
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 experienced dry mouth or extreme thirst? What tips do you have for others experiencing this same symptom? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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