Chat Transcript for Dr. Tammy Utset
January 9, 2008
Moderator
Good afternoon. The Lupus Foundation of America is pleased to welcome Dr. Tammy Utset.
Dr. Tammy Utset has been at the University of Chicago since 1998, where she has established a large lupus clinical practice and academic lupus database. She is very active in clinical and translational lupus research, and in lupus clinical trials. Recent topics of research have included neurocognitive dysfunction, work disability, the role of blood viscosity (thickness) in strokes and heart attacks in SLE, physical exercise in lupus, mammographic findings in lupus, and nutritional factors in lupus osteoporosis.
Dr. Utset attended the University of Virginia, graduating with a B.A. in Biology summa cum laude and then attended Yale University School of Medicine. At Yale, her senior thesis focused on lupus research in the laboratory of Dr. Joseph Craft, and she was awarded the Harry Lamport Biomedical Research Prize. After residency in Philadelphia, she was accepted by Johns Hopkins for her Rheumatology Fellowship program, and remained at Johns Hopkins to complete a Masters in Public Health in 1993.
Currently, Dr. Utset is collaborating in translational research projects on lupus nephritis and autoantibody production in lupus. As Rheumatology Fellowship Program Director at the University of Chicago, she trains and inspires the next generation of rheumatologists to pursue careers focused on lupus care and research.
We welcome Dr. Utset, and thank her for joining us this afternoon.
Dr. Utset
Before we start, I want to emphasize that any recommendations or statements that are made in this Webchat should be discussed with your doctor before you institute a significant change in your activity or habits. Lupus is such a variable disease, in severity and manifestations, that it is difficult to simply generalize across individuals. Your doctor, physical or occupational therapists are your very best resources, and the statements in this Webchat are food for thought, to educate and to provoke discussion with your providers.
Moderator
Without further delay, let's begin. The first question comes to us from Colorado. What is a good exercise program for lupus patients who have aching joints?
Dr. Utset
In general, lupus patients are likely to sustain low-impact, mild-to-moderate intensity exercise programs best. These would include walking programs, bike riding, swimming or water exercise classes. For more vigorous patients, strong cardiovascular work-outs (if approved by your doctors) can be sought with bikes, walking briskly (3-4 miles per hour), or elliptical/step machines. These types of exercise have a lower risk of joint trauma than high-impact exercise techniques. High impact exercise such as aerobics, kickboxing, running, etc. may be significantly harder to sustain due to risk of joint/tendon/muscle trauma. A reasonable eventual exercise goal would be 30 minutes of exercise 3-5 days per week. Starting out really slow, even a 5 minute exercise period, is a good idea for someone who is currently not exercising at all, and very gradually build up the time and intensity as tolerated. If fatigue stops you from exercising for very long, consider exercising for short intervals several times a day. You should discuss the appropriate level of exercise intensity with your doctor based on your individual case.
Moderator
I have lupus nephritis and SLE. Whenever I exercise, I find that the next day I have severe joint pain and an increase in urinary protein. How do you recommend exercising when it seems to exacerbate the lupus? -- Mason, MI
Dr. Utset
There are a lot of factors which can contribute to joint pain flares after exercise. I will go over several of them here, and then you need to discuss with your doctor what may be the major limiting factors in your case and what strategies are most likely to be helpful in improving your exercise tolerance.
Active joint inflammation
If you have active joint inflammation (synovitis) due to your lupus in the joints being exercised, then a lot of exercise involving these inflamed joints is likely to exacerbate the symptoms. Switching to another format exercise to avoid stressing that part of your body (if feasible), or to non-weight bearing exercise (biking) or water exercise, may improve your ability to exercise.
Joint damage
If you have damage to a joint, including tendon/ligament damage, bone/cartilage damage, or osteoarthritis (age-related arthritis) on top of your lupus, then weight-bearing exercise will be harder to tolerate on that joint. The mechanics of the joint are likely to be abnormal. A professional supervised program by a physical or occupational therapist is the best option to design a program to strengthen a damaged joint rather than irritate or worsen it.
Obesity
Being overweight will increase strain on weight-bearing structures including the back, hips, knees and feet. In addition to working on weight loss, non-weight bearing exercise methods such as reclining biking or water exercise can be very helpful strategies in people who are overweight and have a lot of joint pain or back pain with exercise.
Exercise Regimen
If you are exercising an excessive amount of time, using excessive weight, or performing excessive numbers of repetitions, then joint, tendon and muscle pain are much more likely to occur from the exercise, and then you may end up giving up on your exercise program due to pain. Lupus patients tend to have a lot of muscle atrophy (and fatigue) and it will take a lot of time and patience to reclaim physical fitness. It is really, really important to start out very slowly and gradually increase your exercise regimen over time instead of overdoing it and giving up due to exacerbation of symptoms. Referral to physical therapy can be helpful in this respect, to design a safe program, supervise body mechanics, and build confidence.
mt77
I am a 30-year-old female with a history of Class IV Lupus Nephritis. I am currently on 1500 mg of CellCept daily. I also have a history of susceptibility to infection including Listeria and Acinetobacter, while on 2500 mg of CellCept in November/December 2006. I am concerned about infection from gym facilities. Given my history, do you foresee a higher risk of infection from working out at a gym. Or am I just worrying to much?
Dr. Utset
MRSA, or methicillin-resistant staph infections, are increasingly common in the community setting. They most often start out as a "boil" and can be mistaken for a insect bite -- but get worse fast. Generally individual risk at a gym will be low, however, unless there have been staph infections reported there. Again, discuss this with your doctor because if you are on very strong medications then this might be a consideration. If you are on moderate lupus medications then I doubt this should be a major concern -- but you should always be keeping an eye on yourself for these odd skin lesions and let your doctor know.
ErikaH
Are there any studies that prove that lupus patients who exercise X hrs per week actually reduce their number of flare ups and levels of depression?
Dr. Utset
There are two components to this question. We know that exercise is terrific for depression in anyone, and is actually as effective as medication in relieving depression. However, there have not yet been studies that have shown lupus to be effective in decreasing lupus flares. Reasons to exercise in lupus include reducing risk of heart disease, helping to prevent osteoporosis, controlling blood pressure, diabetes or high blood pressure, and simply feeling better, stronger and more in control of your life.
Moderator
Are there any particular vitamins that lupus patients should take to stay healthy? I have heard that vitamins A, K, and B-12 can be helpful. -- Williamston, MI
Dr. Utset
There have not been adequate scientific studies proving that specific vitamins are helpful in treating lupus. However, it is important to have a good, balanced diet to maintain health. If you don’t eat a balanced diet with a good amount of fruits and vegetables, then taking a general multivitamin is a very good idea. The most common vitamin deficiency in lupus is vitamin D deficiency due to sun avoidance. (You get vitamin D either from diet or sun exposure.) It is important to get enough dietary vitamin D to maximize bone health and not provoke or exacerbate osteoporosis -- probably a daily intake in the range of 800-1000 IU per day is best rather than the “minimum daily requirement” of 400 IU.
There is a small (and not very high-quality) literature to suggest that a vegan (vegetarian) diet might be helpful in lupus and other autoimmune diseases. I have an occasional patient who swears by this, and there is some rationale behind it. Saturated fats (in animal products primarily) are pro-inflammatory, while unsaturated fats (in fish and vegetables) do have anti-inflammatory effects. Simply taking unsaturated fat supplements such as fish oil or primrose oil without reducing or eliminating saturated fat, such as found in red meat or butter, is much less likely to be helpful than if the dietary elimination of these bad fats is successful. Of course, eliminating that saturated fat is also beneficial for your heart and body weight, and may decrease your risk for certain cancers as well.
Moderator
I have had lupus for many years now, and I am on a lot of medication, some of which are steroids. Now I know they pump you up, and I have gained quite a bit of weight. I asked someone about taking diet pills as well as exercising and eating right. I was told they wouldn’t work for me, because of all the other medications. Could this be true? I am so very depressed about my weight, I know I should do more than I am to help myself, but I hurt a lot and my fatigue most days is awful. Can you please give me a suggestion? -- Spokane, WA
Dr. Utset
Diet pills are not a “magic cure” for obesity. They have never been shown to result in long term, permanent weight loss, and fluctuating weight up-and-down is very bad for health -- worse than obesity itself. Diet pills in the past, in fact, have had very severe and even fatal side effects -- those particular pills (phen-fen) have been taken off the market. So, I don’t recommend depending on medication to make you lose weight -- your weight will be determined by the balance between what you eat and how active you are. Prednisone, of course, makes this balance harder to maintain, but it is still a matter of energy intake versus energy output. Exercise can be helpful with both the pain and fatigue, but if you do get a lot of pain with exercise it might be good to start out exercising via a formal physical therapy referral, including water therapy. Also talk to your doctor about your depression symptoms, and whether they are severe enough to need to be addressed medically. Depression itself lowers your pain threshold, so you feel MORE PAIN if you are depressed than if you are not. It is very important to your overall health to recognize, acknowledge and treat depression.
jbs
Regular exercises and watching what I eat gave me more energy and my painful joints disappeared. Separating proteins and carbs, no coffee, white foods or dairy made all the difference for me.
Camden
Is B12 deficiency common with lupus?
Dr. Utset
Vitamin B12 deficiency sometimes occurs due to antibodies against a protein necessary to absorb it. Since lupus patients make all sorts of funny antibodies, they do sometimes have this problem. Also, if the gut is abnormally slow/paralyzed, then this sometimes this interferes with the absorption. Symptoms of deficiency are often neuropathy (numbness in feet especially) or anemia.
Peg
Do you recommend taking anti-inflammatories before exercising to reduce the symptoms of inflammation? Every time that I try to run my knees get very sore so can I take something to reduce that reaction? -- Peggy from Toronto
Dr. Utset
If your doctors permit you to take these medications, and the exercise otherwise does not provoke prolonged symptoms, then taking anti-inflammatories may improve your exercise tolerance somewhat. However, it is also important to respect pain, and if what you are doing is provoking pain then perhaps the type, frequency or duration of exercise is more than your body is able to handle well. So, taking anti-inflammatories and simply not listening to your body is not a good solution.
Moderator
For lupus patients who have chronic fatigue, how do we know when the fatigue is more concerning and we should hold off on exercise? Should we postpone exercise when running a low grade fever? How about pleurisy? -- Fountain Hills, AZ
Dr. Utset
Let common sense be your guide. If you are taken ill with a lupus flare, feel severely, abnormally fatigued, have unusual pain, and run a fever, it is only reasonable to back off on your exercise for a few days (or few weeks, based on how things go). If you, however, have the same old chronic daily fatigue which never seems to go away, it is generally OK to exercise with that -- that is just part of the background chronic symptoms from lupus and exercise might even help with that kind of fatigue. Again, clear this with your doctor.
Moderator
I am so tired all the time. I hardly have the energy to work. How can a person exercise and work a job? -- Bluffton, IN
Dr. Utset
It is hard to get started exercising when you have a lot of fatigue, but once you get started you may find that the exercise does make you feel better. And it is terribly important in helping to maintain a good body weight, bone health and a healthy heart and blood pressure. Try exercising just a little (start gradually) early in the day, before you are too exhausted -- perhaps in the morning before you work if that is practical, or over a lunch hour. Going for walks is a good stress-reliever and first step in exercising, and doesn’t require the added time of going to a gym. A treadmill or exercise bike at home (if practical for you) also makes exercising less difficult, since you don’t need to go anywhere to exercise, or deal with adverse weather or sunlight exposure.
Moderator
I am an aerobic director at a fitness center and have been exercising for over 12 years. I have been diagnosed with lupus and now I am unable to complete even the simplest classes. I can get through the class, but the next day I will be "flush" and unable to get out of bed. I am so disappointed in myself and struggling to find the right balance. Any suggestions? -- Brookwood, AL
Dr. Utset
Despite your previous aerobics role, you aren’t exercising to the same degree now due to your chronic health condition and most likely have a lot of deconditioning. If you have had to be on steroids, this directly causes muscle atrophy and it will be a struggle to rebuild. You need to start very slow and gradually build up -- working out in an exercise class environment may not be the best setting, as you may feel obliged to keep up with the pace of others and thus over-do it and set yourself up for failure. Don’t hold yourself to an external standard of fitness -- just do what is going to be a sustainable, regular exercise program and make you feel better and stronger over time. Aerobics itself may be too high-impact and high-intensity. A lower impact independent exercise program may be best for you, such as biking, swimming, or low impact exercise machines.
Brenda
I try to walk 3 miles a day. While walking I do fine. Once I finish, I find I become very stiff for awhile and can hardly get up from a chair. Once up, it takes a few minutes to get in motivation. I feel like the joints are frozen. Is this common after this type exercise?
Dr. Utset
Stiffening up after immobility is a very typical symptom in any kind of arthritis patient, and it even has a medical name, "gell phenomenon" or "gelling up." The key is to keep light activity going as much as possible, and shift joint positions frequently (especially the knees - where people have this the most). Walking 3 miles a day is good, and I would not decrease your exercise due to stiffness alone, I would try to keep moving. You could experiment with cross-training with biking, swimming or other low-impact exercise and see if that affects your symptoms - but keep moving!
Moderator
Is weight training OK to do as part of a regular exercise regimen, if you don't have any joint pain? -- Gaithersburg, MD
Dr. Utset
Weight training is a little risky for lupus. Lupus patients are a bit prone toward tendon ruptures, and lifting weights can cause tendon ruptures. So, definitely lifting heavy weights is not a good strategy -- if any weight lifting is done, low weights with more repetitions is a safer approach than high weights with fewer repetitions, and DON’T push hard on the amount of weight lifted.
Moderator
Hello Dr Utset. I have SLE, and it is in my joints & muscles throughout my body. I am 42. First, I am wondering what the best type of exercise is, and if you think physical therapy is recommended. Second, I am wondering if there are any foods that help stay healthier, and help our body fight lupus. Thank you. -- Carson City, NV
Dr. Utset
I’ve already mentioned some thoughts on exercise regimens and dietary issues. Physical therapy can be helpful if you find you are in too much pain when you try to exercise on your own, or if you have specific problems with joint pain in weight-bearing parts of your body during exercise or if you just need general conditioning. Occupational therapists mostly do arms: they can be particularly helpful for lupus patients with hand arthritis which is limiting activities, and can prescribe exercises and also are very knowledgeable about splints, braces and assistive equipment to help people with impaired use of hands and wrists.
"Personal trainer" is a nonspecific term and these individuals have variable degrees of training, and may not have experience supervising people exercising in the setting of health conditions like lupus. So if you want a “personal trainer” to help with your exercise program, perhaps your doctor or physical therapist can recommend one with whom they have worked, or perhaps a lupus support group member or local lupus foundation has identified someone who seems very competent and knowledgeable.
peter
My wife was diagnosed with lupus last year. She is a real go-getter and I have trouble getting her to slow down at the best of times! It seems that many people in the chat have experienced some general fatigue, even from the daily activities of life, rather than just when exercising. Is it possible that lupus won't cause fatigue in all people?
Dr. Utset
Sure, although fatigue in lupus is very common it is not necessarily universal. She has come this far without fatigue problems, so that is a very good sign that fatigue may not be a big feature of her particular case of lupus.
Moderator
I had my thyroid removed on October 10, 2007 and I still have no energy. Between the thyroid medication and my Imuran for my lupus, shouldn't this help build my metabolism back up? -- Triangle, VA
Dr. Utset
It is still possible you are getting your thyroid back in balance, since your surgery was pretty recent. Be sure your doctors follow up with lab tests to be sure you have the right amount of thyroid hormone in your system. However, chronic fatigue is really, really common in lupus. Low dose steroids (if you are not already on steroids) often helps, if the fatigue is paralyzing, but since there are a lot of side effects with steroids this would be a decision requiring careful discussion of risks and benefits between you and your doctor. Some patients benefit from hydroxychloroquine in regards to their fatigue. A prescription version of DHEA is under study in lupus and may help with this in some people. Imuran (azathioprine) helps lower prednisone requirements but may or may not improve fatigue.
Moderator
I am an active 27 year old female with lupus. I have completed one full and 3 half marathons since my diagnosis. Recently I have begun training for another race but find it especially difficult to get out of bed to train in the morning. How do I know when it’s better for my body to keep resting instead of exercising? Once I wake up and start my run I usually feel great. -- Nashville, TN
Dr. Utset
That is terrific that you have been able to sustain such a rigorous exercise program. If you feel good running, and don’t feel ill afterward, then it sounds like you are still doing OK with this (super high-impact) exercise program even if you are sluggish in the AM, and don’t need to back off at this time unless it seems to be provoking bad symptoms of joint pain, lupus flare, etc. Again, you should keep an ongoing dialogue with your doctor about this, since it is pretty unusual (and great) to be able to be to exercise to this extraordinary degree in the setting of SLE.
toriestar
I don’t enjoy the extremes of lupus; I can be flying one day and a mess the next. Any tips?
Dr. Utset
That is the nature of lupus, and certainly one of the things that makes it so hard to deal with -- that unpredictability. Certainly you need to be sure to pace yourself, don't do an excess amount one day and pay the price the next - try to be moderate in your activities and give yourself time to rest. I don't know if exercise might smooth things out or not, but if your doctor thinks it is safe for you, it might help you to cope better with the emotional stresses of this terribly unpredictable disease and feel that you are doing something for yourself.
Moderator
Does lupus (SLE) truly make it more difficult to lose weight? Or is it just the fatigue that leads to more rest and less exercise? -- Owatonna, MN
Dr. Utset
SLE itself doesn’t make it harder to lose weight, but steroids (prednisone or medrol) do, and inactivity does. A variety of other medication can predispose toward weight gain also -- the list is long so you might want to explore this with your doctor if it is an issue. Also, an underactive thyroid is extremely common in lupus and causes fatigue and weight gain, so be sure your doctor checks that every once in a while.
Moderator
I was diagnosed with lupus at 51. I have not been able to exercise without having a flare since I was 46. Is there any research on this exercise/flare connection? -- Dallas, TX
Dr. Utset
I am not aware of specific research on this exercise/flare connection, and would want you to review your exercise format as described initially, as to why perhaps such connection is so severe in your case. Perhaps you are over-doing it or have predisposing factors to pain such as joint damage. Another factor which can cause exercise difficulties is fibromyalgia. Fibromyalgia is a widespread chronic soft tissue pain syndrome not mediated by autoimmune problems, and it is common in the general population. It is markedly exacerbated by exercise too. This might add to exercise problems in SLE patients, who often may also have some fibromyalgia pain. I don’t know if that is a contributing factor in your case, or if it is a straightforward lupus flare problem -- you might clarify with your doctor.
Moderator
My mom was diagnosed with lupus about two years ago. She is about 100 pounds overweight and also has ITP. Walking is difficult for her because of the knee and leg pains as well as shortness of breath. What exercises can I encourage her to do that won't cause her so much stress? Also is there a resource to find a local rheumatologist in our area? The doctor she is seeing now is very overwhelmed and hardly ever does follow up with my mom. -- Norfolk, VA
Dr. Utset
Obviously, your mother would need to clear any exercise program with her doctors. Lupus patients who are overweight and in a lot of pain may benefit from water exercise, either via a physical therapy referral or via an arthritis water exercise class at the local YMCA or other community resource. The water unloads their body weight and allows relatively pain-free exercise. Riding a stationary bike also would help -- again, that would unload the weight from her legs and allow her to exercise better. She sounds pretty medically complex, so this is a situation where referral to physical therapy may be most appropriate.
To find a local rheumatologist, you might want to contact your local chapter of the Lupus Foundation of America. You can do so here.
Moderator
Should a lupus patient with nephritis exercise regularly and if so, what kinds of exercises are most recommended? -- Philadelphia, PA
Dr. Utset
Having organ involvement per se does not necessary prohibit exercise -- it matters what type and also what doses of steroids you are on. Again, check with your doctor as to whether it is OK to exercise and to what intensity in your individual case. Being on high dose steroids, like when nephritis is first diagnosed, is probably a period when rigorous exercise is not prudent - they cause muscle atrophy and you would be at risk of injuring yourself. Once you get down to reasonable doses of steroids then more rigorous exercise could be resumed. Low impact and low intensity exercise like walking programs are OK in most circumstances.
Moderator
I have pulmonary fibrosis, secondary to SLE. I am moderately active, exercising no more than 40 minutes each day and limiting activities to walking and yoga. I'm wondering if you would encourage me to take up hiking. I want to push myself, just not sure how far to push. -- Washington, DC
Dr. Utset
“Pulmonary rehab” is a distinct regimen of exercise for patients with lung diseases who need to build up physical endurance, and some of my patients with pulmonary fibrosis have really loved it. It can be pretty challenging, based on your capacities. I don’t know your functional status and whether you qualify -- you should ask your doctor. It has definitely improved the quality of life of some of my patients.
Moderator
That is all the time we have for today’s chat. Thank you to Dr. Tammy Utset for joining us.
Please join us Wednesday, January 23 at 3 p.m. Eastern for our guest Dr. Peter Chira, from Stanford University. Dr. Chira will discuss Teens & Lupus. This is the rescheduled chat from December 2007.
Check out the LFA’s blog, located here http://lfa-inc.blogspot.com/.
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