Q&A with Dr. Betsy Blazek-O’Neill - Complementary Care and Lupus

Betsy Blazek-O’Neill, MD is a board-certified specialist in Physical Medicine and Rehabilitation, and medical director of the Integrated Medicine Program at Allegheny General Hospital in Pittsburgh, Pennsylvania.

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. Is there a difference between complementary and alternative medicine/therapy?  Woodbridge, VA

The term “alternative medicine” (or “alternative therapy”) is used when referring to treatments that are used INSTEAD OF conventional medical treatment.  “Complementary medicine” or “complementary therapy” refers to treatments that are used ALONG WITH conventional medical therapy. A newer term that many now use is “integrative medicine/therapy” which implies that complementary therapies are INTEGRATED INTO THE USUAL TREATMENT SPECTRUM, often by hospital programs, and often under the supervision of a physician.

There are non-conventional therapies that can be helpful in lupus, but the safest path for lupus patients is one that involves discussing complementary therapies with your treating doctor. Doing so is the best way to avoid any dangerous interactions or omissions. If you feel your treating doctor is not open to this type of discussion, you may need to find another doctor who is comfortable with such discussions. You need to be able to talk to your lupus doctor about any concern.

2. I have seen so much on the internet about different herbs or products that can improve my lupus or even make it go away.  How do I know if these products or websites should be trusted or not?  Alexandria, VA

I advise patients not to get any medical information from an internet site that ends in “.com,” meaning that it is a commercial site. These sites MAY have accurate information, but they may provide misleading and sometimes even false information to sell their products. More helpful internet sites are those that end in “.edu” or “.org,” as these tend to be educational or non-profit organizations. These organizations are usually motivated to provide accurate information, instead of selling products.

Two very accurate and informative internet sites are those offered by (1) the National Institutes of Health and (2) the Lupus Foundation of America (you’re already there!).  Both of these sites offer a wealth of information about what is known about herbal and other products that might be recommended for lupus.

The bottom line right now?  There is no one herbal product known to significantly reduce lupus symptoms, although very little study has been done in this area.

3. Are there any effective non-drug therapies for headaches/migraines or sleeping problems?  San Antonio, TX

Relaxation therapies are some of the best non-drug therapies for both headaches and sleep problems. There are many relaxation CDs or MP3 downloads (many are free on the internet or as podcasts) that can be listened to for 10-40 minutes once or twice a day that may help. One can also learn relaxing breathing techniques or various forms of meditation for relaxation. Biofeedback is quite helpful for headache symptoms, and could also be helpful for sleep. Biofeedback is usually taught by a psychologist, and such sessions are often covered by health insurance.  Acupuncture can be quite helpful for both problems. Acupuncture should be provided by a licensed practitioner with experience treating those problems. Massage could also be helpful in some cases of headaches (particularly muscle tension headaches). Regular massage could also assist with sleep.

Herbal preparations for sleep have some safety issues, so I don’t usually recommend those. However, a cup of chamomile tea before bedtime is a safe and effective way to improve sleep quality. Coenzyme Q10 has been shown to be helpful for migraine headache when taken as a dose of 150mg per day. Be aware that nutritional supplements are not regulated by the Food and Drug Administration. This means that at this time there is no mechanism to assure the safety and effectiveness of various supplements.

4. Is acupuncture recommended for the relief of muscle and joint pain?  Venezuela

There are good quality studies that show acupuncture can be effective for treatment of joint symptoms related to osteoarthritis and rheumatoid arthritis. There is also at least one small study showing effectiveness in lupus. Additional studies show that acupuncture can be effective for muscle pain related to fibromyalgia and chronic back pain. Acupuncture can also be effective for stress management and depression control. This is important because stress and depression can worsen pain symptoms of any kind.

5. Research found vitamin D level directly correlates with lupus activities. What dose of Vitamin D supplements do you recommend lupus teenagers take? Are there any special concerns with supplemental vitamin D?  San Jose, CA

In general, vitamin D is fairly safe to take. However, because it is a fat-soluble vitamin, it could build up in the body if used excessively. For that reason, I recommend that all lupus patients have their vitamin D levels checked with a blood test. I also recommend that they start vitamin D supplementation under the supervision of a doctor. If your level is quite low, your doctor may give you very high doses at first, and then a lower maintenance dose later. Anyone who has not had a level checked should not use more than 2000 international units per day. The blood test is simple, can be done in most labs, and can help inform whether higher doses are needed, and for how long.

6. Are there any pros or cons to the use of Glyconutrients?  Ontario, Canada

“Glyconutrients” refers to a group of carbohydrate compounds including mannose, xylose and others. Companies that sell these compounds market them heavily to cancer patients and also claim that they can be helpful in lupus and other conditions involving the immune system. Their claims suggest that using these products can improve health greatly because these compounds are involved in cellular communication.

If anything, I think most people in modern cultures consume far too many carbohydrate substances, making it unlikely that individuals will be low in these compounds. There is no research that shows that taking these products actually increases the levels of the compounds in the body. There is currently no research evidence that these products are helpful in lupus (or any other condition). The “research” touted on the company’s website is related to laboratory research performed on mechanisms of cellular communications.  There have been no clinical trials looking at actual effectiveness in lupus or cancer patients.

You would be far better served learning how to eat a really healthy diet, than paying good money for unproven products such as these.

7. My 14 year old daughter was diagnosed with lupus less than a year ago. What is a safe way to help her body eliminated toxins? We already eat organic whenever possible. Should she be doing some detox regularly?  Mount Angel, OR

There are many detoxification regimens available today, from fasting by itself, to purging the digestive tract with various herbs, special foods, and commercial products. None of these are particularly healthy for a body that is in a rapid state of growth, especially bone growth. It can also be dangerous to give a teenage girl the idea that periods of fasting or food avoidance are “healthy,” because of the risk of eating disorders in that population. 

Eating organic is good, especially if those organic foods are mostly whole foods (not processed foods) and include lots of fresh fruits and vegetables. Fresh fruits and vegetables contain many antioxidants, which help deactivate and remove toxins from the body. High-fiber foods help remove toxins from the gut. Using spices in the diet, like cinnamon and ginger in oatmeal, Indian spices in savory foods, fresh green herbs in salads and vegetable dishes, also help cleanse the body. Plenty of water will also help the body remove toxins. A variety of different foods in the diet will help in attacking various types of toxins that may enter the body.

Also remember that there are many toxins in household cleaners, yard and lawn products, and health and beauty products. It is important to minimize the use of chemicals in your family’s daily life, and to search for products made with ingredients that are less harmful to the body. The website of the Environmental Working Group can be very helpful for information about specific products to seek out and avoid.

8. What are the alternative options of CAM medicine for children with lupus? Is there an age where this type therapy may not be appropriate?  Laurel, MD

There is no specific age cut-off for the use of complementary therapies, but each case would be considered individually. If you are referring mostly to dietary supplements, these should be used with caution in children because toxic levels of some products could occur. A children’s multi-vitamin might be useful, particularly if your child does not like to eat healthy, whole foods including fruits and vegetables.  Fish oil supplements made specifically for children may be helpful in reducing harmful inflammation related to lupus, and have other health benefits (support nervous system growth, may reduce allergic symptoms). Fish oil supplements are generally safe, but you should let your doctor know that your child is using it.

I would not recommend other supplements unless you and your doctor discussed their use.

9. I would like to know what I should eat.  I need some advice for simple good nutritional examples of what I should be eating.  Willoughby, OH

The most important rule for eating is to avoid processed foods. These are prepared or partially prepared foods like frozen dinners, cake mixes, candy bars, grocery store bread, bakery items, prepared canned or boxed foods, even some “health food bars”! These processed foods contain several types of ingredients that are quite harmful for people with uncontrolled inflammation, like lupus patients. The modified sugars, modified fats, and chemical additives promote harmful inflammation and prevent your immune system from working properly.

This means you need to buy mostly fresh “whole” foods—foods that are mostly in the form they started out as. Fresh fruits, fresh vegetables, whole grains, and legumes (beans, peas, lentils) form the basis of this kind of eating.  Small amounts of meats, eggs and dairy from healthier sources (organic if possible) are allowable. Eating foods high in omega-3 fatty acids like walnuts, pine nuts, and certain kinds of fishes (wild caught salmon, mackerel, sardines) is a good strategy.  Including “good fats” like nuts, seeds, avocados, and olive oil is also good. Using fresh greens (spinach, kale, chard) in your recipes is a great choice.

This also means you need to cook or make more of your own food. This doesn’t have to be as time-consuming as you might think. You can make a pot of soup or stew with a minimum of preparation time, and have leftovers for several days. You can keep healthy lunch or snack items available in your pantry and fridge (hummus with vegetables, fruit and plain yogurt, sardines and whole wheat crackers, salad fixings, apples with peanut or almond butter). You can even learn to find better choices when you eat out: find restaurants that serve fresh food, use smaller appetizers as your main meal, and try salads with simple oil and vinegar dressings. 

Once you get started eating fresh, healthy foods, you will enjoy it so much you won’t want to go back to eating processed foods!

10. Could there be a benefit to reducing the intake of foods that may produce an inflammatory effect in the body - such as wheat, dairy, sugar and artificial sweeteners?  Milford, PA

There is fairly good evidence that reducing the use of regular sugar and artificial sweeteners can reduce harmful inflammation in the body by promoting healthy insulin metabolism. Regular dairy products may promote inflammation, more so than organic dairy products do, although this seems to depend on the individual. Some people are more sensitive to dairy products than others in terms of how allergenic they are, and this is separate from lactose intolerance, which is mostly a problem of digestion.

The effect of wheat on inflammation in the body is complicated, and we need to learn more about it. Certainly refined wheat flours, like white flour, in higher amounts can influence insulin metabolism in the direction of more harmful inflammation. Whether wheat itself causes inflammation is subject to debate. Certainly individuals who have celiac disease proven by testing must avoid wheat in any form, as it damages the gut and by doing so interferes with normal nutrient intake and health. Until we learn more about how wheat affects whose who do not have celiac disease, I recommend using organic or whole grain wheat products in small amounts, and learning how to use other whole grains in the diet.

11. Are there any foods, exercise or therapies that are beneficial to overcome memory impairment in lupus?  Cedar Rapids. IA

A diet rich in fresh fruits and vegetables and whole grains will provide antioxidants and nutrients necessary for proper brain function, particularly B vitamins. Foods that contain omega-3 fatty acids also seem to be helpful: oily fishes (salmon, mackerel, and sardines), walnuts, pine nuts, and olive oil. There have been studies that suggest that drinking coffee during midlife may help prevent memory problems in older age, but those studies are preliminary and there is no agreement on how much coffee is helpful. I generally recommend that people limit themselves to 2 cups per day, earlier in the day, to prevent sleep difficulties and anxiety. There have been no studies looking specifically at coffee in lupus patients.

Regular exercise is one of the best ways to improve overall brain function. Walking for 20-30 minutes a day could be all you need, although more is even better. Tai chi is a form of exercise that has been shown to improve brain function in older individuals, so this could be a great choice for someone with lupus who also has memory problems. The Arthritis Foundation sponsors tai chi classes called “Tai Chi for Arthritis” in several U.S. cities. These classes have been designed for people who might have joint or other health issues and might require even gentler tai chi exercises than usual. The classes are fun and have many healthy benefits beyond improvement in thinking abilities. You could find out if they are available in your area by going on the Arthritis Foundation website (www.arthritis.org).

There are no other therapies specifically known to improve memory in lupus patients, but anything that reduces your stress will likely make your memory better, as stress can have a major impact on memory. Relaxation CDs, meditation, massage, listening to calming music, spending time with friends you enjoy, laughter—any of these (and many others) can reduce your stress and make it easier to think straight!

12. Are there any specific complementary options to combat the side effects of steroids?  Overland Park, KS

I am not aware of any complementary therapies that have been tested to specifically reduce the symptoms of steroid use. Eating a healthy diet could lessen the effects of steroids on the insulin system, although often steroids make you hungry for unhealthy foods! Do the best you can. 

Relaxation therapies could assist with some of the mood swings and sleep problems. It is possible that acupuncture treatments could help, but there is no research evidence to back that up yet.

13. Like others with lupus, I suffer from fatigue.  Is it safe to use stimulants like coffee or herbal stimulants like Garcinia Cambogia to help get me through the day or allow me to exercise?  Cerritos,  CA

It is safe to use caffeine in the form of coffee or tea, in small to moderate amounts. One to three cups per day are probably OK…although they shouldn’t be triple-grande cups!  In my opinion, other herbal products that act as stimulants are not known to be safe for use in lupus. Garcinia cambogia cannot be used along with statin drugs, and may worsen dementia symptoms in some individuals. 

14. My rheumatologist feels that complementary therapies are of no extra benefit in my overall lupus care. I’m under the impression that they could be. Should I just venture forth on my own in adding complementary therapies to my current treatment or continue to work with my doctor on this? I would like to do everything possible to improve my quality of life but not to the detriment of my current treatment.   Johnson City, TN

There probably are some complementary therapies that could be helpful to you. I would concentrate on therapies that are safe. Examples of these include acupuncture, relaxation therapies, massage, and lifestyle behaviors. Lifestyle behaviors include regular exercise, healthy nutrition and regular stress management practices. If you stick with therapies that have minimal potential for harm, your doctor may be less resistant. If you get benefit from these therapies, maybe your doctor will eventually become more open to them. 

By all means, continue to advise your doctor about any treatments you are using. If you don’t feel comfortable with your doctor’s response to this desire of yours, you may need to find another doctor. Remember, you are in charge of your own health and wellness. Your doctor is a very knowledgeable part of the equation, but you have to decide what is right for you. Patients who become invested in making choices about their own health and wellness generally do better than those who just sit back and “receive treatments”.