Scleroderma, also known as systemic sclerosis (SSc), is a rare, chronic autoimmune disease characterized by the abnormal thickening and hardening of the skin and connective tissues. While primarily affecting the skin, scleroderma can also impact internal organs, including the lungs, gastrointestinal tract, kidneys, and heart. One of the many challenges faced by individuals with scleroderma is unintentional weight loss, which can significantly affect their overall health and well-being.
What is Scleroderma?
Scleroderma is not a singular disease but rather a group of diseases sharing a common characteristic: abnormal connective tissue leading to skin tightening. This tightening occurs due to the overproduction of collagen, a protein essential for strong and healthy connective tissue. When the body produces too much collagen, it results in the thickening and fibrosis (scarring) of the skin and other tissues.
Scleroderma is classified into two main types:
- Localized Scleroderma: This type primarily affects the skin, causing thick patches or streaks that feel waxy. Localized scleroderma typically does not affect internal organs and may resolve on its own over time.
- Systemic Sclerosis (SSc): This type can affect both the skin and internal organs. Systemic sclerosis is further divided into subtypes, including diffuse, limited, and sine sclerosis.
Early Symptoms of Scleroderma
The onset of scleroderma can vary, but some common early symptoms include:
- Raynaud's phenomenon: This condition causes the fingers and toes to lose circulation upon exposure to cold, turning white. Raynaud’s phenomenon usually precedes skin changes.
- Painful joints and morning stiffness: Nonspecific muscle pain and stiffness are often some of the earliest symptoms of scleroderma.
- Red, swollen hands: The skin appears mildly inflamed with swelling and often redness.
- Fatigue: Patients with diffuse scleroderma often experience loss of energy.
- Weight loss: Unexplained weight loss can be an early indicator of scleroderma.
Weight Loss in Scleroderma: A Common Concern
Weight loss is a significant concern for many individuals with scleroderma, particularly those with systemic forms of the disease. Several factors can contribute to this weight loss, including gastrointestinal complications, decreased appetite, and the effects of medications.
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Gastrointestinal Involvement
The gastrointestinal (GI) tract is one of the most commonly affected organ systems in scleroderma, with up to 90% of patients experiencing GI manifestations. The fibrosis associated with scleroderma can reduce muscular activity in the GI tract, leading to slowed movement of food, malabsorption of nutrients, and bacterial overgrowth.
- Esophageal Dysfunction: Dysfunction of the lower esophagus results in chronic heartburn and possible esophageal scarring. The esophagus is the area where most people with SSc scleroderma have problems.
- Small Intestine Malabsorption: The small intestine may lose the ability to push food through, leading to malabsorption and increased bacterial growth. The same fibrosis that is affecting the muscles in the gut can also reduce the ability of the gut wall to absorb nutrients from the food.
- Gastroparesis: Scleroderma can cause slow emptying of food from the stomach into the small intestine.
- Intestinal Pseudo-Obstruction: In this condition, the bowel is not physically blocked as in true bowel obstruction but has just “had enough” and stops working. This is caused by weakening of the gut muscle.
- Constipation: In scleroderma, there is a weakening of the gut muscles and impaired motility. Severe constipation is defined as less than one bowel movement per week.
These GI issues can lead to a variety of symptoms, including:
- Loss of appetite
- Difficulty swallowing (dysphagia)
- Heartburn
- Nausea and vomiting
- Bloating and abdominal pain
- Diarrhea or constipation
Decreased Appetite and Early Satiety
Many individuals with scleroderma experience a decreased appetite and a feeling of fullness after eating only a small amount of food (early satiety). This can be due to the GI issues mentioned above, as well as other factors such as fatigue, depression, and medication side effects.
Medication Side Effects
Some medications used to treat scleroderma and its complications can also contribute to weight loss. For example, CellCept, an immunosuppressant drug, is known to cause weight loss in some patients.
Malnutrition Risk
The combination of GI problems, decreased appetite, and medication side effects can lead to malnutrition in scleroderma patients. Malnutrition has been linked to a more aggressive course of the disease and could derive from complications related to gastrointestinal involvement, as well as from numerous extra-digestive factors. Studies have shown that malnutrition and weight loss are significantly associated with pulmonary hypertension, heart failure, and the extent of skin fibrosis.
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The CREST Syndrome
Many patients with limited scleroderma eventually develop a cluster of symptoms that are listed using the acronym CREST. CREST is an acronym for calcinosis, Raynaud’s phenomenon, esophageal dysfunction, sclerodactyly and telangiectasia. Dysfunction of the lower esophagus results in chronic heartburn and possible esophageal scarring. The small intestine may also lose the ability to push food through to the large intestine leading to malabsorption.
Managing Weight Loss in Scleroderma
Managing weight loss in scleroderma requires a comprehensive approach that addresses the underlying causes and focuses on maintaining adequate nutrition. Some strategies include:
- Nutritional Counseling: Consulting with a registered dietitian can help individuals with scleroderma develop a personalized eating plan that meets their nutritional needs and addresses their specific GI issues.
- Frequent, Small Meals: Eating small, frequent meals throughout the day can be easier to tolerate than large meals, especially for those with early satiety or gastroparesis.
- Easy-to-Digest Foods: Choosing foods that are easy to digest can help reduce GI symptoms. Examples include cooked vegetables, lean proteins, and low-fat dairy products.
- Avoiding Trigger Foods: Identifying and avoiding foods that trigger GI symptoms, such as spicy, fatty, or acidic foods, can help improve appetite and reduce weight loss.
- Managing GERD: Treating gastroesophageal reflux disease (GERD) with medications such as proton pump inhibitors (PPIs) can help reduce heartburn and improve esophageal function.
- Enzyme Supplementation: Digestive enzyme supplements, such as bromelain, may help improve nutrient absorption and reduce intestinal distress.
- Medications to Improve Gastric Emptying: Medications like Reglan or Domperidone can help improve gastric emptying and reduce symptoms of gastroparesis.
- Treating Bacterial Overgrowth: If bacterial overgrowth in the small intestine is contributing to malabsorption, antibiotics may be prescribed.
- Addressing Dry Mouth: Sugar-free lozenges to keep the mouth moist and over-the-counter dry mouth products such as Biotene mouthwash and oral gel can also help for people with symptoms.
- Exercise: Regular exercise, such as swimming, can help maintain joint mobility, muscle strength, and stimulate blood circulation.
- Monitoring and Treating Complications: Regular check-ups and prompt treatment of complications such as pulmonary hypertension, heart failure, and kidney involvement are crucial for managing the disease and preventing further weight loss.
Research Findings on Scleroderma and Nutrition
Recent research has shed light on the nutritional challenges faced by individuals with scleroderma. A study published in the journal Nutrients assessed the diet and eating habits of 69 patients with systemic sclerosis. The study found that:
- High sodium intake and suboptimal energy consumption were common in the study group.
- Malnutrition and weight loss were significantly associated with pulmonary hypertension, heart failure, and the extent of skin fibrosis.
- Patients with digestive symptoms reported less frequent nighttime snacks.
- The participants who had suffered unintentional weight loss consumed significantly lower amounts of sugars, preserves, and snacks.
- Liver transaminases were inversely correlated with the consumption of nuts and seeds.
These findings highlight the importance of addressing nutritional deficiencies and providing tailored dietary advice to individuals with scleroderma.
Scleroderma and mental health
Recent studies have shown that more than 50% of all scleroderma patients develop moderate to major depression. A significant number of scleroderma patients also suffer from Sjögren’s syndrome (also called Sicca syndrome). The primary symptoms are dry mouth and eyes. Hypothyroidism (reduced function of the thyroid) is very common in systemic scleroderma because of either fibrosis of the thyroid or thyroid autoimmune disorder. Hypothyroidism causes many bodily functions to slow down. Sleep disturbance is also common with scleroderma patients.
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