Life Management During HCV Treatment

1. Life Management During HCV Treatment Alan Franciscus Executive Director, Hepatitis C Support Project Editor-in-Chief, HCV Advocate Website www.hcvadvocate.org Editor-in-Chief, HCV Advocate Websitewww.hbvadvocate.org Join me on Twitter – HCVAdvocate & Facebook – HCVAdvocate www.hcvadvocate.org - August 2010

2. GOAL The goal of this presentation is to provide information and advocacy for people who are undergoing HCV treatment www.hcvadvocate.org - August 2010

3. Medical Care and Support The two most important components of life management on HCV treatment are medical support and support from all areas of your life The HCV treatment is different for everyone One day at a time! www.hcvadvocate.org - August 2010

4. Introduction Key Points: HCV Treatment Preparing for Treatment General Health Tips Side Effect Management After Treatment www.hcvadvocate.org - August 2010

5. HCV Treatment GOALS of treatment: Clear virus out of the body Reduce inflammation & scarring Slow disease progression, Improve symptoms and quality of life To put HCV behind them and move on with their lives Sustained virological response (SVR) HCV is undetectable during and 6 months following HCV medical therapy 5 year follow-up – 99% still HCV RNA undetectable www.hcvadvocate.org - August 2010

6. HCV Treatment www.hcvadvocate.org - August 2010

7. Current Treatment: Standard Protocol • Pegylated (injected once a week) • Ribavirin (pill or capsule – oral twice a day) • Genotype 1 –48 weeks • Pegylated injected once a week; • Ribavirin 1,000/1,400 mg/day • Genotypes 2, 3 –24 weeks • Pegylated injected once a week; • Ribavirin 800 mg/day www.hcvadvocate.org - August 2010

8. Current Treatment: Side-effects Interferon Ribavirin • Physical • Fatigue • Muscle/joint pain • Nausea • Headaches • Dry skin • Insomnia • Psychological • Anxiety depression, mania • And more….. • Anemia, rash, dry cough Black box warning: birth defects • Blood Deficiencies • Low white blood cells • Low platelets • Low red blood cells www.hcvadvocate.org - August 2010

9. Complementary Medicine (CAM) • National Institutes of Health CAM Report*: • 38.3% of adults use some from of CAM – significant increases since 2002 • CAM natural products include fish oil/omega 3’s, glucosamine, Echinacea, and flaxseed. • If herbs or supplements are used–report to medical provider • CAM therapies include acupuncture/acupressure, deep breathing exercises, meditation, massage therapy, and yoga • *Released 12/2008 www.hcvadvocate.org - August 2010

10. Preparing For Treatment Preparing for treatment is half the battle! www.hcvadvocate.org - August 2010

11. Preparing for Treatment: Financial • Financial Considerations • Employment • Insurance • Workplace www.hcvadvocate.org - August 2010

12. Preparing for Treatment: Medical Tests • Pregnancy Test – effective contraception • Viral Load • Genotype • Baseline CBC Tests • Biopsy? www.hcvadvocate.org - August 2010

13. Preparing for Treatment: Medical Tests • Eye Exam • Medical and Dental Procedures • Immunizations • Hepatitis A, hepatitis B, Pneumonia, etc…. www.hcvadvocate.org - August 2010

14. Preparing for Treatment: Pegylated / Ribavirin • HCV Medications • Pegylated interferon – self-injection first shot • Storage of pegylated interferon at home and traveling • Disposal of needles • Ribavirin taken with food • Pill containers / reminders www.hcvadvocate.org - August 2010

15. Preparing for Treatment: Support • Develop a support network: • Family, friends, loved ones, co-workers • Support Groups • ‘Live’ • On-line www.hcvadvocate.org - August 2010

16. General Health Tips The following slides include general information to help people remain healthy while on HCV treatment www.hcvadvocate.org - August 2010

17. Food Safety Advise clients to avoid raw & undercooked shellfish HAV / Vibrio vulnificus Food hygiene is important to stay healthy www.foodsafety.gov www.hcvadvocate.org - August 2010

18. Adequate Fluid Intake • Fluid intake is important for: • Organs, skin, digestive system, flushes toxins, etc. • Drink about eight- 8 oz glasses of water a day • Most people do not drink enough water • Yes, you can drink too much water! www.hcvadvocate.org - August 2010

19. Nutrition • Nutrition is important for general health and keeping the liver healthy • Start at www.mypyramid.gov • Tips for clients: • Strive for a diet low in salt, saturated fats, sugar and cholesterol, • Choose multigrain & high fiber food • Eat generous amounts of fresh fruits and vegetables • Avoid acidic or overly spicy food • Think of food as medicine www.hcvadvocate.org - August 2010

20. SUPPLEMENTS • Client should avoid megavitamins and supplements • Vitamin A and vitamin D should be avoided in high doses • General recommendations: • Vitamin supplement (daily requirements with no iron) • Client should always check in with a medical provider www.hcvadvocate.org - August 2010

21. Sleep • Many people with hepatitis C have sleep problems especially while on HCV treatment • Most people need 7 to 9 hours of sleep • Some people with hepatitis C may need more sleep especially while on therapy • Seek professional help if insomnia is persistent www.hcvadvocate.org - August 2010

22. Stress Management • Stress can break down the immune system • Stress can make it difficult to stay on treatment • Relieve stress with: • Exercise • Meditation • Prayer • Yoga • Qi Gong • Help with stress: express yourself! www.hcvadvocate.org - August 2010

23. Physical Fitness • Important for overall physical and mental health especially on treatment • Especially helpful for fatigue and depression – build in rest periods • Everyone should check in with a medical provider to make sure it is safe to exercise • It’s not an all or nothing strategy • More information and other strategies to become physically active at: • www.cdc.gov/physicalactivity www.hcvadvocate.org - August 2010

24. Attitude • People with hepatitis C should strive to keep a Positive but realistic attitude. Advice: • Don’t think things are worse or better than they are • Get the right information • Stay in the present : • Don’t dwell on the past or imagine a future 0f sickness • Visualize health instead of illness • Get support and give support to others www.hcvadvocate.org - August 2010

25. Attitude: Appearance • Stay groomed – when you look good – you generally feel better • Develop routine – example: • morning shower, shaving, make-up, etc. • Dress in comfortable clothing • Brush and floss teeth daily www.hcvadvocate.org - August 2010

26. Side Effect Management The most important strategy to manage HCV treatment-related side effects is working closely with medical provider BEFORE the side effects become worse www.hcvadvocate.org - August 2010

27. URGENT ATTENTION NEEDED: • Severe depression • Thoughts of harming yourself or others • Persistent or very high fever • Blurry or loss of vision • Difficulty breathing • Bloody diarrhea • Unusual bleeding or bruising • Severe stomach or back pain • You or your female partner becomes pregnant www.hcvadvocate.org - August 2010

28. Fatigue • Exercise • Healthy diet • Water • Stress reduction • Balance activity with rest • Take short naps (no more than 20 minutes) • Rub earlobes for >7 seconds • This too shall pass www.hcvadvocate.org - August 2010

29. Muscle and Joint Pain • Advice from medical provider on OTC and prescription pain killers • Gentle stretching • Apply heat or ice packs • Massage • Warm baths www.hcvadvocate.org - August 2010

30. Nausea • Avoid foods or odors that trigger nausea • Avoid spicy, greasy, and deep-fried foods • Eat small amounts of food every few hours • Drink and eat slowly • Advice from medical provider on OTC • Peppermint, chamomile, ginger • Acupressure/acupuncture www.hcvadvocate.org - August 2010

31. Diarrhea • Drink plenty of fluids –water, weak tea, etc. • Eat small frequent meals • Avoid spicy, fried or greasy foods • Avoid very hot or very cold foods • Reduce consumption of caffeinated drinks and tobacco • BRATT diet–bananas, rice, applesauce, toast, & tea www.hcvadvocate.org - August 2010

32. Headaches • Limit caffeine – coffee, teas, and soda • Drink lots of water and other clear liquids • Avoid loud noises, bright lights and strong smells • Exercise • Advice from medical provider on OTC www.hcvadvocate.org - August 2010

33. Dry Skin • Avoid soap – use non-soap cleanser substitute • Drink plenty of water • Apply moisturizer frequently especially after shower or bath • Avoid too hot or too cold showers or baths • Oatmeal baths • Protect the skin from the sun www.hcvadvocate.org - August 2010

34. Rash • Ribavirin rash – common • Avoid scratching – try rubbing, vibration or applying pressure • Apply moisturizer frequently • Take oatmeal baths • Wear loose fitting clothes • Get medical provider advice www.hcvadvocate.org - August 2010

35. Insomnia • One of the most common side effects • Get medical advice • Use bed for sleep and sex only • Develop a routine • Avoid any stimulates before bedtime—caffeine, exercise, getting too stirred up, food • Eject snoring partner and pets www.hcvadvocate.org - August 2010

36. Weight Loss • Treat food as medicine • Consult with a dietician • Try nutritional supplements, canned formulas, protein powders, instant breakfast drinks, power bars and pudding www.hcvadvocate.org - August 2010

37. Hair Loss • Generally not bodywide – hair can shed, become brittle, texture changes • Avoid chemicals and do not wash too frequently • A short, layered haircut makes hair look fuller • Use hair products—conditioners, sunscreen • Avoid hair dryer, curling irons and teasing www.hcvadvocate.org - August 2010

38. Libido Changes • Decreased interest in sex • Women: vaginal dryness • Use water based lubricants • Men: difficulty with maintaining an erection • Erectile dysfunction medications • Communicate with partner • Temporary – will return to normal after therapy *don’t forget birth control measures www.hcvadvocate.org - August 2010

39. Brain Fog • Calendar/ Daily Planner for taking PEG • Pill containers for ribavirin • Exercise • Sleep • Do puzzles, crosswords, play memory games • Put everything in the same place – visualize • Use Post-it notes • Laugh! www.hcvadvocate.org - August 2010

40. Anxiety & Depression • Talk with medical provider before, during and after treatment – antidepressants • Join a support group • Reduce stress - try meditation, prayer, deep breathing • Avoid stimulants – tobacco, caffeine • Balance activity with rest • Find activities that you enjoy www.hcvadvocate.org - August 2010

41. After Treatment Side effects decrease over time If taking anti-depressants – stay the course Emotional issues: Achieving an SVR Not achieving an SVR www.hcvadvocate.org - August 2010

42. Medical Care & Support The two most important components of life management on HCV Treatment are medical support and support from all areas of your life One day at a time! www.hcvadvocate.org - August 2010

43. On-line Resource The HCV Advocate Web site has more information on the topics discussed in this presentation : www.hcvadvocate.org The HBV Advocate We site has information on hepatitis B: www.hbvadvocate.org www.hcvadvocate.org - August 2010