Welcome to the CVD Prevention Counseling Program Chat. Please feel free to ask our team any questions about lupus or CVD and we will do our best to answer them.
Moderator: Hello everybody.
Moderator: The Cardiovascular Disease Prevention Counseling Program for Hospital for Special Surgery (HSS) patients with lupus and/or positive antiphospholipid antibodies (aPL) is a free program, partially supported by the New York Community Trust, and partially by HSS. The program provides a personalized assessment and education of CVD risk factors, and offers tailored lifestyle recommendations for its patients.
Moderator: This is the first time the CVD program is hosting a webchat event. We have invited here today Dr. Doruk Erkan, our program's director, Monica Richey, NP, our nurse coordinator, Sotiria Everett, MS, RD, our program's nutritionist, and Lisa Konstantellis, MSPT, our program's physical therapist. Virginia Haiduc, MD, will be the moderator. Welcome everybody, and thank you for joining us today. We are ready for your questions.
Lil: In the last several months, I was diagnosed with several heart issues. I have lupus. I am using a diet that includes less fat, more grains and vegetables. I exercise as I can. Can you suggest other behaviors that would be helpful?
Sotiria-Nutrition: Hi Lil - those are great behaviors. Make sure your diet also has some lean protein such as chicken or fish. Do you have any specific diet goals?
Lil: At the moment maintaining my weight, also my waist continues to grow even though I stay at a constant weight.
Sotiria-Nutrition: Maintaining your weight is important; sometimes more of our weight is distributed around our waist.
Monica NP: Lil, when you measure your waist, be sure that you measure 1 inch below the belly button. You start at the top of the hip bone, then bring the tape all the way around. This is the measure that cardiologists use to check for a healthy waist. Do not use your real waist.
Lisa - PT: In terms of exercise, you can try to incorporate daily stretching to keep your joints healthy as well as some form of aerobic exercise (walking is a great choice).
Josephine: Hello, should a patient with lupus lift weights? I ask because I'm worried about my joints, would it bad for them, especially as I'm getting older.
Lisa - PT: Resistance training is helpful to stay strong at any age, but you should stick with light to moderate weight to prevent injury. You should never feel like your muscles are straining and avoid any exercise that causes increased pain.
Grandma: Are there specific foods that are people with lupus should avoid?
Sotiria-Nutrition: Very good question, and very common. Make sure you avoid foods high in saturated fats, like whole fat dairy products and animal fats that may contribute to heart risks; also avoid salty foods. Some research indicates avoiding alfalfa sprouts also.
ajacarter: I was on a medication that made me lose a lot of weight (over 35lb) and my skin sags.... I am off the med now...what kind of exercise can I do? I have problems wt fatigue and breathing.
Lisa - PT: You should try to slowly incorporate light resistance training with exercise bands. Also a short walk every day - start with 10 minutes - will help slowly build your endurance and lessen fatigue. Try to pace yourself and this will help with your breathing. The best time to walk is about 45 minutes after meals.
Grandma: Are there vegetables and fruits that are particularly good for lupus?
Sotiria-Nutrition: Berries are high in antioxidants, which are helpful. Leafy greens and orange vegetables such as sweet potatoes and carrots have lots of beta carotene which contribute to heart health.
Grandma: Since Lupus is a disease where the autoimmune system does not work right is it wrong to boost the autoimmune system with supplements?
Monica NP: Yes! do not take any supplements that boost your immune system. Make sure you talk to your doctor about all over-the-counter medication you take. On the other hand, you can take supplements that decrease inflammation such as Fish Oil - Omega 3 supplements as well as Vit E. Make sure you are not taking any blood thinners such as coumadin/lovenox. Those supplements have blood thinning capabilities.
ajacarter: About the Fish Oil - what exactly is EPA and DHA, and how much of that I'll need per day?
Sotiria-Nutrition: EPA and DHA are essential fatty acids (components that your body can't make and are related to heart health). The American Heart Association recommends 1 gram of DHA and EPA each day if you have heart disease, or eat 2 servings of fatty fish a week to meet your recommendations if you don't have heart disease.
Ladii: As a person who currently has Lupus and has a low B12 count, what are the best foods to eat to try to help boost that level up?
Sotiria-Nutrition: Animal proteins are sources of vitamin B12 - try to eat chicken, fish, and lean red meat such as lean beef; talk to your doctor if you should take a vitamin B12 supplement.
Ladii: Is there anything in particular that I should stay away from?
Monica NP: Not really; vitamin B12 is only found in animal food sources, just make sure you don't eat too much red meat.
David: What is the risk of heart attacks in lupus patients?
Dr. Erkan: Cardiovascular disease means either coronary heart disease including heart attacks or cerebrovascular disease, including stroke.
Dr. Erkan: There are certain factors that increase the risk of cardiovascular disease: hypertension, smoking, and diabetes are some of the traditional ones. In addition, lupus disease activity is a risk factor for cardiovascular disease or cardiovascular events.
Dr. Erkan: Studies have demonstrated higher rates of cardiovascular disease risk factors (such as high blood pressure or diabetes) and cardiovascular events (such as heart attacks or strokes) in patients with lupus compared to healthy individuals.
Dr. Erkan: In general, the risk of a heart attack is increased almost 10 times in lupus patients, compared to the general population.
David: thank you
Ladii: Does the risk increase with age?
Dr. Erkan: Yes it does. Age is a risk factor for cardiovascular events inpatients with or without lupus. Cardiovascular event risk doubles every 10 years after age 55. Thus it is critical for lupus patients to control all cardiovascular disease risk factors such as hypertension. Also it is very important to control the lupus disease activity.
Dr. Erkan: http://www.hss.edu/conditions_cardiovascular-disease-prevention-lupus-patients.asp
The above link will provide some information about how to prevent cardiovascular events in lupus patients.
Teresa: To follow up on some of the previous recommendations to eat fish and lean meats: I know we are supposed to eat fish twice a week. Is it true that eating fried fish is not good for my health though?
Sotiria-Nutrition: Fried fish is not considered a healthy choice of fish because when you batter and fry the fish you are adding extra fat (including unhealthy saturated fat), calories, and carbohydrates. Most fish that are fried also have less omega-3's than fish you would bake, such as salmon. It is much healthier to eat fish that has been baked or broiled with little added fat; these types of cooking methods are leaner.
Grandma: I understand there is a new medicine for lupus. Is it for everyone?
Dr. Erkan: No, the new medication (Belimumab) is only for lupus patients who have active disease (without kidney or central nervous system involvement) despite standard therapy.
Julie: Can medications prescribed to treat lupus also put patients at risk for CVD?
Dr. Erkan: That's a very good question. Yes, some medications can increase the risk for cardiovascular disease. Especially prednisone, which can increase the risk of hypertension and diabetes. For this reason, it is important to limit the use of prednisone in lupus patients.
Julie: How often will my doctor check my blood for CVD risk factors and what are those tests?
Dr. Erkan: High blood pressure, high blood sugar, smoking, high cholesterol, no exercise, age, family history, poor diet, obesity are all some of the major cardiovascular risk factors. They should be all regularly monitored by your physician(s).
Monica NP: Your cholesterol should be monitored yearly if normal and every 6 months if on medication. Your blood sugar should be checked at every doctor visit.
Ladii: Why does cholesterol play an important role in CVD?
Sotiria-Nutrition: Cholesterol is important since a high level increases your risk of heart disease - such as heart attacks.
Monica NP: If your cholesterol is high it will "stick" to your arteries and cause it to clog, just like a pipe, and it can close it completely - causing a heart attack or a stroke, depending where the problem is.
KARNETTER MILLIGAN: Can you tell us what medications are best for lupus patients with limited or no involvement of the organs?
Dr. Erkan: Every lupus patient is different. For this reason, it is difficult to give a general suggestion. For patients with mild lupus disease activity, hydroxychloroquine is generally an effective medication.
CureLupus100: I always hear that waist circumference is important for people with lupus... why is this?
V Haiduc: Waist circumference is an indicator of how much belly fat you have. Too much fat on your abdomen increases your risk of heart disease. Carrying around all that fat adds also an extra strain on your back, knees and joints. Waist Circumference should be:
Women < 88cm (34.6in)
Men < 102cm (40.2in)
A waist circumference bigger than the above numbers usually means that you might need to lose weight.
CureLupus100: So I guess waist circumference is important for the entire population then?
V Haiduc: Yes, it is.
Josephine: What kind of exercise should I do to increase my bone strength?
Lisa - PT: Josephine - Weight-bearing activities like walking and light resistance training with exercise bands or light hand-weights will help keep your bones healthy. These types of exercises will also help keep you strong and improve your overall health and well-being.
CureLupus100: I was told that people with lupus should avoid tofu. Is this true? If so- why? I love tofu!
Sotiria-Nutrition: Luckily for you, that is not true - tofu is a quality source of protein that is low in fat and has beneficial nutrients.
CureLupus100: That's great, Sotiria! Thanks!
Julie: Do you think that feeling sad or depressed about this disease is a CVD risk factor?
Monica NP: If you are depressed you are less likely to eat well and be active, so in that sense, yes.
ajacarte: Are there recommended fruits/veggies for juicing that lupus patients can use to help the immune system?
Sotiria: Make sure you follow a balanced diet. It is better to eat whole fruits to make sure you get the fiber - I would recommend snacking on fruits like berries, apples, oranges and melons.
Sotiria: If you have trouble swallowing, you can add berries to smoothies. Just throw them in a blender - no juicer is needed! Smoothies and pureed foods can help you get fruits and vegetables; soups like bean and vegetable soups are good also.
Moderator: We'll close the chat in 5 minutes. Any other questions?
Josephine: Thank you so much for this helpful information. When is the next chat?
Grandma: Thank you for your time and this chat opportunity.
Julie: Thank you panel. This was great!! When is the next chat?
CureLupus100: this was very helpful: and fun!
Moderator: The next chat will be within the next 3 months.
Moderator: I would like to thank the CVD Prevention Team for joining us today. We will keep you posted about future CVD Prevention Counseling Program's events. Please do not forget to follow up with us every three months. If you have further questions please call Monica Richey, NP, at 646.797.8358, or email us at firstname.lastname@example.org. Thank you again for your participation!
Moderator: And a reminder that if you have specific questions related to your health, you should always talk to your doctor.