I presented information on the "whys" of food blockage, primarily for those with ileostomies, at the following link:
https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=34664#275184
A comment was posted seeking information to help deal with Sjögren's dry mouth and an ostomy. To adequately address the content requires a separate, detailed response — be advised that this is a very long response.
Although specific to Sjögren's, others may experience varying degrees of dry mouth. To help those ostomates, I have detailed what Sjögren's is and what the various solutions are intended to address.
After my colon resection, I began to experience severe dry mouth and was unable to eat much due to an altered taste, which inhibited the healing of my colon, leading to many complications that ultimately led to a colostomy. I researched all possible causes of dry mouth. The information that follows is my notes on dry mouth associated with Sjögren's. I apologize in advance for the length of this post, which is why I am making it a stand-alone.
Sjögren's (pronounced Show-grins), the second most common autoimmune disorder, has the highest incidence in causing dry mouth, decreased saliva production, and dry eyes (sicca complex). For those who don't know what Sjögren's disease is and what causes it, I ran across a simplified explanation:
• Imagine your body has an army called the immune system. Its job is to fight off bad guys like germs and viruses. This army has different types of soldiers, and each has a special job.
• In a condition called Sjögren's disease (SjD), the body's army gets confused. It starts attacking its own healthy parts, specifically the glands that make moisture, like saliva in your mouth and tears in your eyes. This is why people with SjD often have very dry eyes and a dry mouth.
• A few key "soldiers" in the immune system army that are involved in Sjögren's:
• The "Peacekeepers" — a special kind of white blood cells called Regulatory T-cells or Tregs. These are the soldiers that are supposed to keep the rest of the army in check. They tell the other soldiers, "Hey, calm down! That's one of our own! Don't attack!" In SjD, these peacekeepers are not working correctly. It's like they've lost their instructions and don't know how to stop the other soldiers from attacking the body's own glands.
• The "Attackers" (Th1 cells, CD4+ and CD8+ T-cells): These are the soldiers that cause inflammation. In SjD, because the peacekeepers aren't working, these attacker soldiers go wild. They invade the moisture-making glands and cause a lot of damage, which is why the glands stop working as well.
• The "Mistake-Makers" (B-cells and autoantibodies): Think of B-cells as factories that make tiny weapons called antibodies. Normally, these weapons target germs. But in SjD, the B-cell factories start making faulty weapons called "autoantibodies." These faulty weapons mistakenly target the body's own cells, adding to the damage.
There is a reason the "Peacekeepers" are ineffective. They need a specific signal to work correctly, which involves a substance called calcium. In people with Sjögren's, the peacekeepers have trouble getting this calcium signal. Because they don't get the right signal, they can't do their job of controlling the rest of the immune army.
In summary, SjD happens because the body's immune system army gets its signals crossed. The "peacekeeper" soldiers that are supposed to control the army are faulty, so the "attacker" soldiers go on a rampage and damage the glands that keep our mouths and eyes moist. This leads to the main symptoms of the disease: dryness.
Treatments that stop these attacks could help people with SjD in the future. There is no cure for Sjögren's disease, but there are treatments to manage its symptoms.
In terms of focus, I will concentrate on saliva production. When salivary glands do not function normally, patients experience difficulty swallowing (dysphagia) and an altered taste sensation (dysgeusia).
Living with both Sjögren's Disease (SjD) and an ileostomy forms a unique set of, often opposing, digestive challenges. Saliva plays a very significant role in digestion.
• First — saliva provides lubrication and moistening. It contains mucus, which coats food particles, making them easier to chew and combine into a slippery, cohesive mass known as a bolus.
• Second — saliva initiates enzymatic digestion. It contains enzymes that begin the chemical breakdown of complex carbohydrates (starches). Other enzymes start the digestion of fats. When saliva is reduced, food enters the stomach less "pre-digested."
• Thirdly — saliva is critical for bolus formation. Chewing, combined with saliva moistening and binding, transforms food from its ingested state into a manageable bolus that is safe and easy to swallow.
Strategies for managing a dry mouth (xerostomia) focus on maintaining oral moisture, stimulating natural saliva if possible, using saliva substitutes, and meticulous oral hygiene. I don't know what all may have been tried, so I will probably mention things you have tried with varying levels of success. Strategies for managing dry mouth to support digestion are:
• Hydration Habits
Specific Actions
■ Sip water/ORS frequently throughout the day.
■ Avoid or limit caffeine and alcohol as they can be drying.
Benefits/Ostomy Safety
■ Moistens oral tissues, aiding in chewing and swallowing.
■ Helps form a more lubricated food bolus, reducing friction.
• Saliva Stimulation
Specific Actions
■ Chew sugar-free gum.
■ Suck on sugar-free hard candies (citrus, mint, or cinnamon flavored).
■ Use products containing xylitol.
Benefits/Ostomy Safety
■ Mechanically stimulates salivary glands to produce more saliva.
■ Xylitol helps prevent dental decay, preserving chewing ability.
• Saliva Substitutes
Specific Actions
■ Use OTC artificial saliva products (sprays, gels, rinses, lozenges like Biotene, Aquoral).
■ Consider homemade saline/baking soda rinses. Benefits/Ostomy Safety
■ Provide temporary lubrication and moisture, mimicking natural saliva.
■ Facilitates easier chewing and swallowing, leading to better bolus formation for safer passage through the ostomy.
• Meticulous Oral Hygiene
Specific Actions
■ Brush gently after every meal with fluoride toothpaste.
■ Floss daily.
■ Attend regular dental check-ups (at least every 6 months).
■ Use topical fluoride treatments or antimicrobial mouthwashes if recommended by a dentist.
■ Avoid sugary/acidic foods and drinks.
Benefits/Ostomy Safety
■ Prevents dental decay, gum disease, and oral infections that can impair chewing.
■ Maintains the ability to mechanically break down food effectively, reducing blockage risk.
■ Other lifestyle modifications, for adequate hydration maintenance, frequently sucking on ice or sipping water/ORS, using a cold air humidifier at night, and sleeping on one's side to minimize mouth-breathing.
For ostomates dealing with both SjD and an ileostomy, dietary choices are important for digestive comfort, nutrient absorption, and ostomy function. You must address the oral challenges of SjD and the needs of an ileostomy.
• A few dietary guidelines are:
Small, Frequent Meals
■ Consuming 5-6 smaller meals or snacks throughout the day may be less taxing to chew and swallow with limited saliva.
Thorough Chewing
■ This is true for all ostomates to minimize the risk of food blockages, and it is even more important when SjD impairs the initial moistening and breakdown of food in the mouth. Food should be chewed until mushy before swallowing.
Initial Post-Operative Diet (Low Residue/Low Fiber)
■ Immediately following ileostomy surgery, and typically for about 6-8 weeks, a low-residue or low-fiber diet is prescribed. It generally includes:
1. Refined grains: White bread, white rice, white pasta, refined cereals (e.g., cream of wheat, cornflakes).
2. Well-cooked, peeled, and seedless fruits: Canned peaches or pears, applesauce, ripe bananas.
3. Well-cooked, peeled, and seedless vegetables: Carrots, green beans, potatoes without skin.
4. Tender proteins: Fish, poultry, eggs, smooth nut butters, tofu. Individuals with SjD often find softer, moister foods inherently easier to manage due to dry mouth.
Anti-Inflammatory Food Choices for SjD
■ As SjD is an inflammatory autoimmune condition, incorporating foods with anti-inflammatory properties may offer symptomatic relief. These include:
1. Oily fish (salmon, mackerel, rich in omega-3 fatty acids)
2. Smooth nut butters are preferable to whole nuts
3. A variety of fruits and vegetables (prepared appropriately) — ensuring fruits and vegetables are well-cooked, peeled, and possibly pureed
4. Olive oil
5. Spices like turmeric and ginger.
For ostomates with SjD and an ileostomy, how food is prepared is as important as what food is chosen. Appropriate texture modification can significantly ease the challenges of dry mouth, improve the safety of food passing through the ostomy, and enhance nutrient absorption.
Texture modification guidance:
• Meats/Poultry/Fish
Problematic Textures with SjD/Ostomy
■ Tough, dry, grisly, processed meats with casings
Recommended Preparation Methods
■ Choose tender cuts
■ Grind, mince, or chop finely
■ Slow cook, braise, stew, or pressure cook.
■ Add sauces, gravies, or broth.
■ Remove casings from sausages.
Examples
■ Flaky fish (baked/steamed).
■ Ground chicken/turkey in sauces
■ Slow-cooked pulled pork (ensure moist)
■ Eggs (scrambled, poached).
• Vegetables
Problematic Textures with SjD/Ostomy
■ Raw, crunchy, stringy, fibrous; skins, seeds, tough stalks
Recommended Preparation Methods
■ Cook until very soft (boil, steam, bake)
■ Mash, puree (e.g., into soups, sauces)
■ Peel and remove seeds/tough stalks
■ Chop finely
Examples
■ Mashed potatoes/sweet potatoes (no skin).
■ Well-cooked carrots, green beans (chopped).
■ Pureed squash or spinach
■ Tomato sauce (seedless).
• Fruits
Problematic Textures with SjD/Ostomy
■ Raw with skins/seeds/membranes; dried fruits; tough/stringy fruits
Recommended Preparation Methods
■ Peel and remove seeds/membranes
■ Cook until soft (stew, bake).
■ Mash or puree
■ Choose canned fruits in juice/light syrup (drained if sugar is a concern).
Examples
■ Applesauce
■ Ripe bananas (mashed if needed)
■ Canned peaches/pears (peeled)
■ Soft melons
■ Smoothies with peeled/seedless fruits.
• Grains/Starches
Problematic Textures with SjD/Ostomy
■ Dry, crumbly (crackers, toast); whole grains with tough bran; popcorn
Recommended Preparation Methods
■ Moisten dry items with spreads or by dipping in liquids.
■ Choose refined grains initially (white rice, white pasta, soft white bread)
■ Cook cereals like oatmeal or cream of wheat until very soft and moist.
Examples
■ Soft white bread with smooth spreads.
■ Well-cooked white rice/pasta with sauce.
■ Moist oatmeal
• Nuts/Seeds/Legumes
Problematic Textures with SjD/Ostomy
■ Whole nuts, chunky nut butters, whole seeds, whole beans/lentils with skins
Recommended Preparation Methods
■ Use smooth nut butters.
■ Grind seeds and add to moist foods (e.g., smoothies, yogurt).
■ Cook legumes until very soft and mash or puree.
■ Remove skins from larger beans if possible.
Examples
■ Smooth peanut/almond butter.
■ Hummus (well-blended).
■ Mashed lentils or refried beans (ensure smooth).
Hydration needs are more complicated when an ostomate has an ileostomy and SjD. SjD contributes to hydration challenges primarily by causing a dry mouth and often an urge to sip fluids frequently. However, if swallowing is difficult or uncomfortable, this might cause the ostomate not to take in enough fluids.
For SjD, sipping water/ORS during meals can aid in moistening food, making chewing and swallowing easier and facilitating bolus formation. But, always a but 😉, for individuals with a high-output ileostomy, standard advice often includes separating fluid intake from solid food consumption by about 30 minutes or limiting fluids with meals to small sips (e.g., no more than 125 mL or ½ cup). This is to prevent "flushing" food through the small intestine too rapidly, which can increase stoma output and reduce nutrient absorption. If dry mouth makes eating without any fluid assistance nearly impossible, taking very small sips of an oral rehydration solution (ORS) during meals might be prioritized for oral comfort and safe swallowing, provided the overall ostomy output remains manageable. Alternatively, more intensive use of saliva substitutes or oral moisturizers immediately before and during meals could reduce the reliance on drinking liquids with food, especially if ostomy output is a significant concern.
Drinking whole or 2% milk with meals appears to have many of the chemical and physical properties of a good saliva substitute. It provides moisture and lubrication. Ostomates who cannot drink cow's milk may find similar benefits in almond or soy milk.
For ostomates with both SjD and an ileostomy, ORS should ideally form the bulk of the fluid intake. Plain water, while providing oral moistening, may not be sufficient to counteract systemic dehydration and can even exacerbate electrolyte imbalances if consumed in large quantities when output is high.
Preventing food blockages is a critical concern for all ileostomates, as undigested food can obstruct the stoma. The risk is magnified for those with SjD because the initial oral processing of food (moistening, chewing, enzymatic breakdown) is compromised.
The heightened risk of blockage due to SjD might lead ostomates to excessively restrict their diet out of fear, potentially resulting in nutritional deficiencies or a diminished quality of life. Many foods typically on "caution" lists can be consumed safely if these preparation and eating principles are diligently followed.
Guidance for managing ileostomy output and preventing blockages, with specific considerations for SjD:
• Fruits
Foods That May Thicken Output (SjD Prep Tip)
■ Applesauce
■ Ripe banana (mash well if dry mouth is severe)
■ Pectin-rich fruits (peeled, cooked)
Foods That May Loosen/Increase Output
■ Fruit juices (esp. prune, grape, high sugar)
■ Very ripe/overripe soft fruits in large amounts
■ Dried fruits (if not rehydrated and pureed)
Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Skins, seeds, pips, membranes (e.g., apple/pear skin, orange/grapefruit pith, berry seeds)
■ Dried fruits (whole or large pieces)
■ Pineapple (fresh/canned chunks)
■ Coconut (raw/desiccated)
■ Mango (stringy varieties)
■ Prep: Peel all fruits, remove seeds/pith. Cook to soften. Puree or mash. Chew thoroughly with moisture.
• Vegetables
Foods That May Thicken Output (SjD Prep Tip)
■ Potatoes (peeled, mashed/boiled)
■ Sweet potatoes (peeled, mashed/boiled)
■ Well-cooked carrots (mashed/pureed)
■ Pumpkin/Squash (peeled, cooked soft)
Foods That May Loosen/Increase Output
■ Broccoli, Brussels sprouts, cabbage, cauliflower, onions (can increase gas and output for some)
■ Spicy peppers
Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Corn (whole kernels), Peas (skins)
■ Mushrooms (can be rubbery)
■ Celery (stringy)
■ Bean sprouts
■ Tomato skins/seeds
■ Tough leafy greens (kale, raw spinach, bok choy)
■ Thick stalks of broccoli/cauliflower
■ Prep: Cook ALL vegetables until very soft. Peel, remove seeds/strings. Chop finely, mash, or puree. Chew thoroughly.
• Grains/Starches
Foods That May Thicken Output (SjD Prep Tip)
■ White rice, white pasta, white bread
■ Oatmeal (ensure very moist)
■ Tapioca
■ Pretzels, saltine crackers
Foods That May Loosen/Increase Output
■ Whole grain products with rough bran (if not tolerated)
■ Sugary cereals Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Popcorn
■ Whole grain breads/cereals with nuts, seeds, or large pieces of dried fruit
■ Brown rice/wild rice (if not chewed extremely well)
■ Prep: Choose refined grains initially. Cook oatmeal/rice very well. Moisten dry crackers/bread. Chew thoroughly.
• Proteins
Foods That May Thicken Output (SjD Prep Tip)
■ Cheese (hard or soft, if tolerated)
■ Smooth peanut butter (ensure adequate moisture when eating)
■ Eggs
Foods That May Loosen/Increase Output
■ Fatty/fried meats
■ Processed deli meats (some)
Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Tough, grisly meats
■ Meats with casings (sausages, hot dogs)
■ Shellfish (can be chewy if overcooked)
■ Prep: Choose tender cuts. Grind, mince, or slow-cook tough meats. Remove casings. Chew thoroughly.
• Nuts/Seeds/Legumes
Foods That May Thicken Output (SjD Prep Tip)
■ Smooth peanut butter (with moisture)
Foods That May Loosen/Increase Output
■ Beans, lentils (can increase gas and output for some)
Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Whole nuts of all kinds
■ Seeds (sunflower, pumpkin, sesame, flax)
■ Crunchy nut butters
■ Whole beans/lentils (skins can be an issue)
■ Prep: Avoid whole nuts/seeds. Use smooth nut butters. Grind seeds into powder. Cook legumes very well and consider mashing/pureeing.
• Dairy
Foods That May Thicken Output (SjD Prep Tip)
■ Cheese
■ Yogurt (plain, smooth)
Foods That May Loosen/Increase Output
■ Milk (if lactose intolerant)
Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Yogurt or cheese with whole fruit pieces, nuts, or seeds.
• Other
Foods That May Thicken Output (SjD Prep Tip)
■ Marshmallows, jelly babies (contain gelatin)
Foods That May Loosen/Increase Output
■ Alcohol
■ Spicy foods
■ Very sugary foods/drinks
■ Sugar alcohols (sorbitol, mannitol)
Foods Posing Higher Blockage Risk (SjD Prep Tip/Avoidance)
■ Foods that are inherently hard to chew down (e.g., some candies, jerky)
Dietary fiber plays a complex role in digestion, and its management is particularly nuanced for individuals with both SjD and an ileostomy. However, a critical consideration for SjD ostomates is the consumption of soluble fiber supplements like psyllium. These supplements require adequate fluid intake to form a gel properly and to prevent clumping or potential choking hazards. Given that SjD can cause dry mouth and sometimes difficulty swallowing, especially thick substances, taking psyllium with a full glass of water might be challenging. If the gel forms too quickly in a dry mouth, it could be uncomfortable or difficult to swallow. Therefore, while beneficial for ostomy output, the method of consuming such supplements needs careful thought. Starting with very small doses, perhaps mixed into moist foods (like applesauce or yogurt) rather than as a standalone drink, might be a safer approach.
Insoluble fiber poses the most significant risk for ileostomy complications, primarily food blockages. Foods high in insoluble fiber, such as fruit and vegetable skins, seeds, nuts, corn, popcorn, and stringy or tough vegetables (e.g., celery, pineapple, raw leafy greens), are difficult for the small intestine to process if not thoroughly broken down. This risk is substantially magnified in SjD ostomates. Saliva plays a vital role in moistening and initiating the softening of fibrous foods during chewing. Without adequate saliva, these already mechanically challenging insoluble fibers enter the digestive system in a much drier, rougher, and less masticated state. This significantly increases their potential to abrade the intestinal lining or, more critically, to accumulate and cause an obstruction at the stoma or in the narrower parts of the small intestine.
While psyllium can be useful for managing ileostomy output, some sources caution that fiber bulking agents, in general, might hinder the absorption of other nutrients or exacerbate electrolyte depletion, particularly in individuals who are malnourished or have poor oral intake. They also do not contribute to systemic hydration, as the water they absorb is excreted with the stool.
*** Let's Talk Medications ***
Due to the significant prevalence of xerostomia, there is an equally significant market of OTC products to treat dry mouth symptoms. These include saliva substitutes and stimulants in the form of sprays, gels, toothpastes, rinses, oral patches, chewing gums, and lozenges. However, no medical trials/studies have shown these products to be effective. All is not lost; many of these products are effective in ostomates when used in combination.
To better understand why medicines can be helpful, it is necessary to explain a few terms, the most important is cholinergic. It is aided by another term, acetylcholine (ACh). ACh is part of the nervous system (parasympathetic nervous system). It transmits the signals that contract smooth muscles, dilate blood vessels, increase bodily secretions, and slow heart rate — quite a mouthful (pun intended 😉). For our purposes, this means ACh is responsible for stimulating the salivary, digestive, and sweat glands.
The above statement hints at the role of the nervous system. It is now a good time to better understand the role of the nervous system — the autonomic nervous system (ANS) in particular. It divides into the sympathetic and parasympathetic systems. The sympathetic component is better known as “fight or flight” and the parasympathetic component as “rest and digest.” It functions without conscious control throughout your lifespan to control cardiac muscle, smooth muscle, and exocrine and endocrine glands, which in turn regulate blood pressure, urination, bowel movements, and thermoregulation. For our purposes, we will limit the functions we are interested in.
Sympathetic nervous system (SNS) – fight or flight
• The sympathetic nervous system signals it's time for battle.
• Organ Responses:
• Decreased GI motility
• Increased secretions from sweat glands
• Suppression of the immune system
Parasympathetic nervous system (PNS) – rest and digest
• The parasympathetic system signals it's time to relax.
• Organ Responses:
• INCREASED SECRETION by SALIVARY GLANDS (lubricates mouth) and lacrimal glands (lubricates eyes).
• Increased gut motility
• Activation of the immune system
As you can see from above, PNS plays an important role in our discussion. We can now discuss cholinergic. Cholinergic drugs increase the amount of ACh released into the PNS.
Although the sensation of the amount or quality of saliva being produced is related to xerostomia, from a pathophysiological 🤨 perspective it is more appropriately diagnosed as salivary gland dysfunction.
Salivary gland dysfunction is usually expressed as a reduced volume of saliva secretion (salivary gland hypofunction) or a change in salivary composition.
Xerostomia, usually called dry mouth, is a repeated problem and indication of salivary gland hypofunction (SGH)
It is important to distinguish between SGH and xerostomia — although related, they are not the same. Xerostomia is a subjective feeling of dry mouth; whereas, SGH is an objective, measurable reduction in saliva output.
Medications that are useful for SGH will be considered since SGH has mainly been used in patients with SjD.
For individuals with SjD experiencing significant dry mouth, prescription medications known as saliva stimulants may be considered.
Potential Benefits for Digestion in SjD Ostomates:
• By increasing the production of natural saliva, these medications can offer several benefits that indirectly aid digestion and ostomy function:
■ Improved oral comfort.
■ Easier chewing and swallowing of food.
■ Better formation of a moist food bolus.
■ Potentially reduced risk of food impaction in the esophagus or blockage in the ileostomy due to better initial food processing.
Gastrointestinal Side Effects and Implications for Ileostomy:
• A significant consideration with these cholinergic drugs is their potential for systemic side effects, particularly on the gastrointestinal (GI) system. While common side effects include sweating, flushing, and increased urinary frequency, of more direct concern for an individual with an ileostomy are effects like:
■ Increased GI motility (the speed at which contents move through the gut).
■ Nausea and vomiting.
■ Diarrhea.
■ Abdominal pain or cramping…
For an ileostomate, drug-induced diarrhea or significantly increased GI motility translates directly into higher volume, more liquid stoma output. This can rapidly exacerbate the pre-existing risks of dehydration and electrolyte imbalances (especially sodium and potassium loss), which are major concerns for anyone with an ileostomy. Ileostomists already lose excessive water and sodium in their effluent and can exist in a state of chronic dehydration. Any medication that further increases these losses must be used with extreme caution.
The Risk-Benefit Assessment:
• The decision to use saliva-stimulating medications for a SjD ostomate involves a careful weighing of potential benefits against significant risks. While improved saliva could greatly aid the initial phase of digestion and potentially reduce the risk of food blockages (a major benefit), the triggering of increased GI motility leading to high ostomy output could result in severe dehydration and electrolyte disturbances (a major, potentially dangerous risk). This decision requires highly individualized medical supervision and a thorough discussion between the ostomate and their PCP/Gastroenterologist/Registered Dietitian/Rheumatologist (for SjD)/WOCN and/or others.
• Furthermore, if a saliva stimulant effectively alleviates the sensation of dry mouth, the ostomates might feel less "orally thirsty." However, if the medication simultaneously increases ostomy output, they could become systemically dehydrated without the prominent oral warning sign they may have previously relied upon.
Importance of Medical Consultation and Contraindications (medications requiring caution):
• Given these potential impacts, it is imperative that ostomates discuss the use of cholinergic drugs, such as pilocarpine or cevimeline, thoroughly with their multidisciplinary healthcare team, including their rheumatologist (who typically prescribes for SjD), gastroenterologist, and ostomy nurse. The perceived benefits for managing dry mouth must be carefully balanced against the potential risks of worsening ostomy-related complications. It may be that lower doses, intermittent use, or a greater reliance on topical oral comfort measures and meticulous dietary preparation are preferred. It is also crucial to be aware of risk factors and precautions for these medications. They are generally forewarned in patients with uncontrolled asthma, narrow-angle glaucoma, and acute iritis. Caution is advised in patients with a history of heart disease, controlled asthma or other chronic lung conditions, kidney stones, or gallbladder disease, as the drugs can worsen these conditions. A thorough medical history is essential before initiating therapy. While not specific to saliva stimulants, it's a general consideration for ostomates that any medication causing rapid GI transit could potentially affect the absorption of other necessary medications being taken concurrently. This is due to reduced contact time of the medication with the absorptive surfaces of the small intestine. This broader implication should be discussed with a pharmacist or physician if significant changes in GI motility are experienced.
Cholinergic Medications
• Two cholinergic medications that have been approved by the US Food and Drug Administration for the treatment of SGH are pilocarpine and cevimeline.
• To better understand these two medications, it is useful to have an understanding of M1, M2, and M3. Think of locks and keys, and M1, M2, and M3 are like different types of locks on your cells. They're part of a system called muscarinic receptors. A brief and simple explanation of how this works:
1. Your Nerves = Messengers: Your nerves send messages using tiny chemicals called neurotransmitters (like "keys").
2. Receptors = Locks: Muscarinic receptors (M1, M2, M3) are special "locks" on the surface of your cells.
3. The Key: The main "key" that fits these locks is called ACh.
4. When the key (ACh) fits into the lock (M1, M2, or M3), it tells your cell to do something specific
• Looking at what is behind each lock:
M1
■ Location: Brain, Stomach
■ Unlocked State: Helps with thinking, memory, and digestion
■ Example: Helps your brain focus (like studying for a test) and tells your stomach to digest food
■ Side Effects in Dry Mouth Meds
M2
■ Location: Heart
■ Unlocked State: Slows down your heart rate
■ Example: Like a brake pedal for your heart — keeps it from racing too fast
■ Side Effects in Dry Mouth Meds
M3
■ Location: Saliva Glands, Sweat Glands, Eyes
■ Unlocked State: Makes you salivate, sweat, and cry
■ Example: Causes spit in your mouth when you eat, sweat when you run, and tears when you cry
■ Side Effects in Dry Mouth Meds
• SjD considerations:
■ Medicines like Pilocarpine (Salagen®) and Cevimeline (Evoxac®) are fake keys that fit into M3 receptors.
■ When they unlock M3:
• Your salivary glands get the signal to make you spit
• But... they also accidentally unlock M3 in other places:
■ Sweat glands: You sweat more.
■ Eyes: You might tear up.
■ Stomach: You might feel queasy.
• The thing to remember is M3 is the gold standard for dry mouth treatment because it turns on saliva. But because it's also in sweat glands, eyes, and your gut, the meds can have side effects. Scientists are trying to make "smarter keys" that only unlock M3 in spit glands.
Comparison of Pilocarpine and Cevimeline
• A brief explanation of how cholinergic medications work:
■ They mimic the action of ACh, a key neurotransmitter in your body's nervous system.
■ ACh naturally binds to muscarinic receptors (specifically M3) found on the surface of salivary gland cells (and also sweat glands, tear glands, smooth muscle, etc.).
■ When these drugs bind to the M3 receptors on your salivary gland cells, they trigger the cells to produce and secrete saliva.
■ Based on our previous explanation, cholinergic medications are "keys".
• Cholinergic medications are used to treat SjD's dry mouth because:
• They directly stimulate any remaining functional salivary gland tissue you have left, forcing it to produce more saliva than it otherwise would on its own.
• They essentially "bypass" the damaged signaling pathways caused by the autoimmune attack and tell the glands to work.
• Cholinergic drugs are a class of medications that work by activating certain receptors (muscarinic) in the body's PNS. These receptors regulate involuntary functions like heart rate, salivation, and digestion.
• Important similarities are:
■ Mechanism: Both primarily target M3.
■ Goal: Increase saliva (and tear) production.
■ Side Effects: Because they stimulate muscarinic receptors throughout the body, both commonly cause:
• Sweating — which can be significant
• Flushing — redness/warmth of the skin
• Urinary frequency or urgency
• Gastrointestinal upset — nausea, diarrhea, abdominal cramps
• Runny nose
• Potential visual disturbances — blurring, especially at night
• Potential effects on heart rate or blood pressure — less common, but requires monitoring, especially with heart
• Dosing: Both are taken orally, multiple times per day (usually 3-4 times), typically 30-60 minutes before meals to maximize saliva flow during eating. They are also taken before bed for overnight relief.
• Requirement: Both require some remaining functional gland tissue to be effective.
• FDA Approval: Both are FDA-approved specifically for treating dry mouth in SjD.
• Important differences are:
■ Specificity: Cevimeline is generally considered more selective for the M1 and M3 receptors, which are predominant in salivary glands. Pilocarpine is less selective and binds more broadly to M1, M2, and M3 receptors.
■ Duration: Cevimeline may have a slightly longer duration of action (potentially 3-5 hours) compared to Pilocarpine (potentially 2-4 hours). This can sometimes mean slightly less frequent dosing for some patients.
■ Tolerability: Due to its slightly higher M3 selectivity, some patients find Cevimeline slightly better tolerated than Pilocarpine regarding side effects like sweating and GI upset, though this varies greatly from person to person. Neither is universally "better" tolerated.
• Reasons for knowing a medication is cholinergic:
■ Understanding they stimulate ACh receptors explains why the sweating, flushing, GI issues, etc., happen. These are expected effects, not necessarily an allergic reaction (though report any severe reactions to your doctor).
■ Taking them 30-60 min before meals/sleep aligns with their peak effect on saliva production.
■ Because they stimulate smooth muscle and can affect heart rate (via M2 receptors), your doctor needs to know about:
■ Asthma or COPD — can cause bronchospasm
■ Narrow-angle glaucoma — can increase eye pressure
■ Significant cardiovascular disease — can affect heart rate/rhythm, blood pressure
■ Peptic ulcer disease — can increase stomach acid
■ They can interact with other drugs that affect ACh:
• Certain antidepressants — TCAs, SSRIs (potentially increasing side effects)
• Other anticholinergics — opposing effect
• Beta-blockers — potentiating heart rate effects
• Finally, in the head-to-head comparison, Cevimeline and Pilocarpine are both cholinergic drugs that work by directly stimulating receptors (especially M3) on your remaining salivary gland cells to increase saliva production. They are the mainstay prescription treatments for SjD. In addition to increasing salivary flow, cevimeline is thought to increase the secretion of digesting and defensive components such as mucins and enzymes, all of which contribute to oral health and pathogen defense.
Cevimeline
• Cevimeline increases the secretions of the saliva and sweat glands in the body.
• Cevimeline is used to treat dry mouth in people with SjD.
• Cevimeline has emerged as a safe and effective therapeutic option for managing salivary gland hypofunction (SGH), particularly in patients with mild to moderate salivary gland damage. Studies have highlighted potential side effects such as increased sweating, abdominal pain, dyspepsia, nausea, and diarrhea.
• One of the studies I read corroborates these findings, demonstrating the ability of cevimeline to enhance salivary flow rate and alleviate dry mouth symptoms in patients with SjD. How well cevimeline helps depends on individual factors.
• Treatment with cevimeline at a dosage of 30 mg three times daily has been well-tolerated and significantly reduces SGH-related symptoms. Increasing the dosage to 60 mg three times a day has been associated with a rise in adverse effects, particularly affecting the digestive system.
Pilocarpine
• Pilocarpine is the most commonly used medication, and it has gained the approval of the US Food and Drug Administration (FDA) for the treatment of SjD, as well as the relief of radiation-induced xerostomia symptoms.
• Oral pilocarpine stimulates salivary flow, alleviating dryness and associated discomfort.
• Regarding the management of SGH, oral tablets represent pilocarpine's main commercially available form. Specifically, Salagen® (a pilocarpine HCl tablet) claims the monopoly in radiation-induced SGH treatment, being the only drug product that has gained approval, both in Europe and the USA. It is a film-coated tablet containing 5 mg of pilocarpine HCl, microcrystalline cellulose as a binder, stearic acid as a lubricant and acidifier, and carnauba wax as a polishing agent. The commonly recommended dose is 2.5 to 10 mg, administered orally 3 or 4 times daily and can be adjusted, depending on patient response.
• Effects are observed within 20 min of ingestion, and pilocarpine has an elimination half-life of approximately 0.76–1.3 h. Pilocarpine's short half-life may necessitate frequent dosing — this can be challenging for many. The potential for confusion or compliance issues with repeated dosing could pose problems, particularly in older adults with mild cognitive deficits. It is necessary to remain aware of the importance of consistent treatment for sustained relief.
• Despite pilocarpine's beneficial uses, certain conditions warrant caution or avoidance:
■ Most side effects are transient or dose-dependent. Patient education on recognizing excessive cholinergic symptoms is critical, prompting healthcare providers to adjust the dose or frequency.
■ Increased Sweating: Common complaint, as pilocarpine robustly stimulates sweat glands.
■ Gastrointestinal Disturbances: Nausea, diarrhea, or cramps due to enhanced peristalsis.
■ Bradycardia and Hypotension: High doses or sensitive individuals might encounter significant parasympathetic cardiovascular responses.
■ Excess Salivation and Lacrimation: Endpoint of the drug's primary mechanism for dryness management.
■ CNS Impact
■ Minimal at standard dosages, although higher exposures could include dizziness or confusion, especially in the elderly.
Baricitinib
• A recent NIH-supported study, https://pmc.ncbi.nlm.nih.gov/articles/PMC12087670/, in mouse models of Sjögren's disease (SjD) offers important insights into this condition, pointing to an important role for dysfunction in regulatory T cells that normally control immune responses to prevent autoimmune diseases. Although these cells have been linked to other autoimmune conditions, their role in SjD had been unclear. The findings also identify a drug already used to treat other conditions including rheumatoid arthritis as a potential therapy for SjD.
• Indeed, in the new study, the researchers found that dysfunction in regulatory T cells in mice leads to severe inflammation that closely resembles what is seen in SjD. The mice had dry eyes, dry mouth, autoantibodies, and lymphocytes in their salivary and tear glands. Mice also developed lung inflammation, which sometimes happens in people with SjD.
• The researchers determined that the dysfunction of regulatory T cells resulted in the overproduction of an inflammatory signal called interferon gamma.
• When they depleted the interferon gamma signal from mouse T cells, they found improvements in salivary and tear gland function. The findings point to interferon signals as a promising target for treating symptoms of SjD.
• To put the idea to the test, the researchers turned to an existing drug called baricitinib that works by blocking interferons and other inflammatory signals. Clinicians already use baricitinib to treat other diseases and conditions such as rheumatoid arthritis, alopecia, and COVID-19. When given to the mice with symptoms like those of SjD, the treatment led to improved salivary and tear gland function and reduced inflammation.
• Researchers think that baricitinib or other treatments that work in similar ways are promising candidates for treating people with SjD.
• Although much more study is needed, these new findings suggest there may one day be more targeted and effective ways to treat SjD and improve the quality of life of millions of people around the world living with it.
• Baricitinib is a medicine that reduces inflammation by blocking specific signals that certain immune cells use to communicate. It is approved and commonly used to treat conditions like rheumatoid arthritis and has also been tried in patients with other autoimmune diseases.
• Baricitinib is considered a promising treatment for SjD because it can target and block molecules in the immune system that cause inflammation and damage in this disease. Here's why scientists and doctors are interested in baricitinib:
■ Stops Overactive Immune Signals: In SjD, certain immune cells make too many signals (like interferon gamma/IFN-γ) that attack the body's own glands. Baricitinib blocks a family of enzymes called Janus kinases (JAKs); these enzymes help carry these harmful signals inside immune cells. By blocking them, baricitinib calms down the immune system.
■ Reduces Gland Damage: Studies in mice with Sjögren's-like disease found that baricitinib reduced inflammation in the salivary and tear glands. This helped protect the glands so they could keep making spit and tears, easing dryness.
■ Showing Hope in Early Human Studies: Some early research and small clinical trials with people who have SjD suggest that baricitinib, sometimes combined with other drugs, can reduce symptoms like dryness and joint pain, and may lower certain disease markers.
Low Dose Interferon-Alpha
• A study found that giving people with SjD a tiny pill of a natural body protein called interferon-alpha helped them make more spit and have less dry mouth.
• IFN-α (stands for Interferon-alpha): This is a special protein your body naturally makes to help control your immune system and fight viruses.
• Low-Dose Oral: They gave it as a small pill that you swallow, not a shot.
• How They Did the Experiment:
1. Get a Group: Researchers found 40 patients who all had SjD and a bad case of dry mouth.
2. Split Them Up: They randomly split the patients into two groups of 20. Group A got the real, low-dose IFN-α pill to take every day. Group B got the placebo (the fake pill).
3. Measure Stuff: For 12 weeks, the doctors measured how much saliva the patients in both groups were making. They also asked them how dry their mouths felt.
• Results:
■ After 6 months of treatment, 50% of IFN-α-treated patients experienced at least a 100% increase in saliva production above baseline, compared to only 3.3% of patients in the sucralfate (control) group.
■ The increase in saliva production was significantly greater in the IFN-α group at every month after treatment compared to the sucralfate group.
■ At each evaluation month after baseline, the mean change in saliva quantity was significantly greater in the IFN-α group than in the sucralfate group.
■ The proportion of intact salivary gland tissue was significantly increased in all IFN-α responder patients who underwent repeat biopsies.
■ Microscopic examination showed a relative increase in the number of salivary glandular epithelial elements and a reduction or elimination of inflammatory cell infiltrate after IFN-α therapy. This preliminary observation suggests that salivary gland tissue may regenerate as infiltrating lymphocytes and associated inflammatory cytokines decrease.
• Of course, we would like to know why all of this works:
■ Think of it like this: Interferon-alpha can act like two different kinds of messengers depending on how much you use.
■ At high doses (like in a shot): It acts like a fire alarm, shouting "ATTACK! ATTACK!" to the whole immune system. This is useful for fighting serious viruses.
■ At low doses (like the pill in the study): It acts more like a wise instructor or a calming coach, whispering instructions to specific immune cells.
• When a person with SjD takes the small IFN-α pill, the medicine doesn't spread all through the bloodstream like a typical drug. Instead, it works in a more clever, local way. Here are the two main jobs it's thought to do:
• Job 1: Retraining the Body's Confused Security Guards
■ Remember how in Sjögren's, the body's immune system (the security guards) gets confused and attacks the saliva glands? The low-dose IFN-α helps to retrain them.
• Local Contact: As the pill dissolves in the mouth and gut, the tiny amount of IFN-α makes contact with special immune cells right there in the lining of your throat and stomach (this area is called the mucosa).
• A "Calm Down" Message: This contact sends a gentle, rebalancing signal to the rest of the immune system. It's like the IFN-α instructor pulls a few of the confused guards aside and says, "Hey, stand down. Those saliva glands are friendly. You're overreacting."
• Reducing the Attack: This signal helps reduce the inflammation (the redness, swelling, and irritation) around the saliva glands. With fewer confused guards attacking them, the glands are less damaged and stressed.
■ Think of it like a noisy, chaotic classroom. The low-dose IFN-α isn't another student shouting. It's the teacher quietly saying, "Everyone, please settle down," which allows the class (your glands) to get back to work.
• Job 2: Waking Up the Saliva Glands
■ Once the attack on the saliva glands has been calmed down, the glands that are still healthy can start to recover. Scientists believe the IFN-α might also have a more direct effect.
• A "Get to Work" Signal: Besides calming the immune system, IFN-α may also send a separate message directly to the cells of the saliva glands.
• Boosting Production: This message can encourage the gland cells to start producing more saliva again. It's like telling the factory workers, "The siege is over! You can turn the machines back on now."
■ So, in a nutshell, the low-dose interferon-alpha pill works because it doesn't cause a big alarm. Instead, it calms down and rebalances the mistaken immune attack and gently encourages the damaged saliva glands to start working properly again.
• Based on the provided source, the proven benefits of low-dose oral interferon-alpha (IFN-α) for SjD are primarily related to improved salivary function and a reduction in the characteristic inflammatory infiltrates in salivary glands.
• Many of the clinical studies have used interferon (IFN) in injectable form in high doses for the management of dry mouth, especially in patients with SjD.
• The injectable IFN is a genetically modified protein, and the lozenge is a natural IFN. The small dosage lozenge formula, at 150 IU three times a day, has decreased SGH and added salivary flow.
• A recent meta-analysis has confirmed that IFN-α at a dose of 150 IU three times daily is effective in increasing salivary production and flow rate and modifies the immunomodulatory action in SjD patients with minimal side effects.
Recent Advances
• Several advanced therapies for SGH and xerostomia have been explored.
■ One is acupuncture, which is a holistic approach that enhances saliva production by improving blood circulation over the parotid gland.
■ Subsequently, intraoral electro-stimulators produce salivation by putting reduced electronic flow levels to the oral mucosa. Electrostimulators could make a 3–4 fold increase in salivary flow and provide considerable relief in patients with severe SGH. Continuous use also boosts the efficiency of neural stimulations. They can either be a replaceable mouthguard-like device or fixed to a dental implant.
■ Salivary pacemakers have been recently tried to improve salivation and indirectly minimize the long-term effects of oral dryness. Devices such as the Salitron system (Biosonics Inc, USA), GenNarino, SaliPen, and Saliwell Crown (implant-supported device) have shown effectiveness in increasing salivation in xerostomia patients.
As you can see, there are multiple approaches to improving SGH associated with dry mouth — dietary choices, food preparation, saliva substitutes, and medication. The situation is complicated with ileostomates because things that can relieve SGH symptoms simultaneously increase ostomy output. This requires carefully evaluating the pros and cons along with experimentation, hopefully, under the supervision of your doctors.
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