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. Author manuscript; available in PMC: 2022 Sep 15.
Published in final edited form as: Best Pract Res Clin Rheumatol. 2021 Sep 15;35(3):101707. doi: 10.1016/j.berh.2021.101707

Table 16.

Key Elements of Recurrent Counseling (Courtesy of LA Saketkoo, rights reserved)

Category Sub-Category Item Advisements for Patients
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
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
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
Pain management - Protection as above
- Topical lidocaine
- Cleansing routine
Signs of infection - Increased pain/tenderness
- Redness
- Purulence
Prevention As much as possible avoid:
- Cold exposure
- Trauma
Topical antibiotics with signs of infection
Additional calcinosis Advisement - Avoid digging to prevent infection
- If intolerable can try repeated soaking in warm Epsom salt water
- Topical antibiotics
Erectile dysfunction - Increased physical activity may help protect circulatory and neuronal function
- Preventive measures as for RP might have a protective effect
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
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
SICCA Wetting and pro-salivation products
Possibly singing, humming, chanting and exercise
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
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
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
Sleep Essentials - Head of Bed Elevation (wedge pillow, leveraging mattress, bricks/books under bed legs)
- Avoid right side lying
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.
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
Bloating - Exercise for motility
- Small frequent meals
Nausea SSc or Medication related - Mobility / exercise to decrease nausea
- Ginger sweets, drink
- Sucking candies
- Cold pops
- Instruction on PRN anti-emetics
Diarrhea SSc or Medication related Logistics until controlled: change of clothes, time planning
Medication use: risks / benefits / when
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
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
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
Conception - Must be a planned
- Medication washout pre-conception
- Discuss assessing extent of ILD, PH, cardiac or renal involvement in light of safe pregnancy
Care of children -Adaptations for child care
- Strategies to manage fatigue
PSYCHOLOGICAL Advocacy / Education Groups
Local support groups
Online self-management program (see resources)