Table 16.
Key Elements of Recurrent Counseling (Courtesy of LA Saketkoo, rights reserved)
Category | Sub-Category | Item | Advisements for Patients |
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VASCULAR | Raynaud | Prevention is key | - Related complications include DUs, calcinosis, osteolysis and core temperature loss - Initiate protective measure in anticipation of and upon noticing a cold atmosphere, before allowing oneself to ‘feel’ cold - Immediate action can result in decreased recovery time, pain and the sequela associated with loss of core warmth (fatigue, headache, incapacity etc.) - Avoid extreme temperature changes, e.g. from cold to warmth - Anticipate cold environments, e.g. air conditioning in summer, grocery store freezer aisle, hospitals etc. |
Core Temperature | - Exercise / movement increases circulation and body heat - Clothes layering and use of insulated vests |
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Peripheral | - Gloves / socks always at hand - Should allow for a thin space to trap a warming layer of air - Pocket hand warmers, can be placed in pockets, gloves, socks, undergarments - Heated gloves / insoles/shoes |
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Digital Ulcers / Calcinosis | Protection | Cushioned bandages for high friction areas Waterproof gloves for washing or handling wet items Bandage and gloves for handling dry household items potentially snagging healing ulcers and to protect from bacteria and chemical irritants Exercise gloves for use of gym equipment |
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Pain management | - Protection as above - Topical lidocaine - Cleansing routine |
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Signs of infection | - Increased pain/tenderness - Redness - Purulence |
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Prevention | As much as possible avoid: - Cold exposure - Trauma Topical antibiotics with signs of infection |
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Additional calcinosis | Advisement | - Avoid digging to prevent infection - If intolerable can try repeated soaking in warm Epsom salt water - Topical antibiotics |
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Erectile dysfunction | - Increased physical activity may help protect circulatory and neuronal function - Preventive measures as for RP might have a protective effect |
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NUTRITION | Calorie intake | Nutritious | - Avocado - Nuts, nut butters - Cheeses, butter - Potatoes, rice - Olive and other oils |
Food Tolerance | Nutritious | - Pureed foods (soups, dips, stews) - Smaller amounts of a food - Foods softened (marinated) with small amounts of citrus or vinegar - Mobility after eating to increase motility |
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HEENT | Oro-facial | Facial Exercises and Massage for skin tightness, mobility and circulation | |
Oral | High risk for dental complications: - Essential follow-up with a dental clinician sensitive to SSc care or perhaps pediatric dentist - Proactive dental care - Keeping mouth moist - Adapted and powered devices for teeth and oral care |
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SICCA | Wetting and pro-salivation products Possibly singing, humming, chanting and exercise |
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CARDIOPULMONARY | Graded exercise essential to health | ||
Control of GERD and PND to avoid lung injury from micro-aspiration | |||
Vaccination for prevention of infection | |||
PH and Cardiac | Monitor for symptoms of heart failure | Daily weights as needed; recording of post-void morning weight Alert MD of new onset lower extremity edema |
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GASTROINTESTINAL | |||
GERD | Esophageal Injury & Lung Risks | Reflux in SSc is a serious issue of which related injury can lead to multiple complications that impact mortality. - Often exists without pain - Pain not equate severity - Esophagitis - Esophageal cancer - Dysphagia and potential loss of swallow function - Strictures & Webbing - Need for esophageal stretching - Acid aggravates lung disease |
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Medications | - PPI daily or twice daily, especially with esophagitis or esophageal ulcer - Adding PRN or OTC agents (e.g. sucralfate, H2 blockade) -- it is perceived that in SSc the benefits of PPIs greatly outweigh associated risks |
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Sleep Essentials | - Head of Bed Elevation (wedge pillow, leveraging mattress, bricks/books under bed legs) - Avoid right side lying |
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Reflux hygiene | - Smaller, more frequent meals - Avoid meals 2–3 hours before lying - Avoid sphincter relaxants at end of day e.g. alcohol, chocolate, caffeine, mint etc. |
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Gastroparesis | - Sleep and hygiene as for GERD - Exercise / walking may help - Gravity strategies for passive digestion - upright position - attention to food consistency e.g. thinner foods - Gastroparesis dietary suggestions for food tolerance |
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Bloating | - Exercise for motility - Small frequent meals |
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Nausea | SSc or Medication related | - Mobility / exercise to decrease nausea - Ginger sweets, drink - Sucking candies - Cold pops - Instruction on PRN anti-emetics |
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Diarrhea | SSc or Medication related | Logistics until controlled: change of clothes, time planning Medication use: risks / benefits / when |
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MEDICATION | See Appendix of Medications | ||
VACCINES | See Table 17 | Pneumococcal immunizations per CDC guidelines Influenza annually Herpes zoster (killed only i.e. Shingrix) COVID-19 |
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EXERCISE | Improves: - Circulation and vascular responsiveness - Body warmth - Sleep - Self-Esteem - Breathlessness - Joint mobility stiffness and lubrication - Skin function - GI function - Possibly erectile function - Nausea - Salivation - Respiratory performance - Cognitive clarity Decreases: - inflammation - Pain (anywhere) - Joint stiffness - Possibly contractures - Possibly skin tightness - Depression - Stress - Fatigue |
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WOMEN OF CHILD-BEARING AGE | Medication toxicity | - Use of contraception essential with specific IS and PAH medications - Discontinuation of specific IS or PAH medications prior to conception |
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Conception | - Must be a planned - Medication washout pre-conception - Discuss assessing extent of ILD, PH, cardiac or renal involvement in light of safe pregnancy |
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Care of children | -Adaptations for child care - Strategies to manage fatigue |
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PSYCHOLOGICAL | Advocacy / Education Groups Local support groups |
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Online self-management program (see resources) |