Tuesday, April 29, 2014 12:00 pm – 12:00 pm EST This discussion is archived.

Join us today to welcome Dr. Helene Alexanderson, who joins us from Sweden. Dr. Alexanderson is a new member of TMA’s medical advisory board, but she has been involved with myositis patients for a long time. Dr. Alexanderson has co-authored many studies showing that exercise helps people with myositis — not only by keeping muscles flexible — but by actually reducing the systemic inflammation of myositis. Dr. Alexanderson is with the Dept of Neurobiology in the Division of Physical Therapy at Karolinska Institute in Sweden. She also works with myositis patients to develop an appropriate exercise routine. Dr. Alexanderson has received some questions that you have left for her in advance, and will also take questions as the discussion progresses. She will give priority to those questions that are of general interest. Dr. Alexanderson, thank you for your participation in today’ s discussion and for your work with myositis patients.

Ask a Question
TMA:

Dr. Helene Alexanderson:

Thanks for having me! Best Regards Helene.

  • Exercise and CPK

    Participant:

    Does exercise increase your CPK value?

    Dr. Helene Alexanderson:

    CPK-levels do not increas over weeks or months of exercise adapted to individuals with myositis. Rather, a few studies have reported a trend towards reduced CPK-levels after 3 months of exercise in polymyositis and dermatomyositis. However, it is normal that CPK-levels increase during and right after an exercise session and then return to normal after about 24 hours. Therefore it so not recommended to have your blood drawn for CPK-analysis during this time frame.

  • Specific Exercises

    Participant:

    I have IBM and finding it harder to walk, I do core and stretching exercises on the bed, used to do water aerobics until diaphragm issues. Would one of those machines that you put on the floor and peddle be of any help, also is lifting light weights doing more harm than good. Any suggestions welcome.

    Dr. Helene Alexanderson:

    I think that a machine like you describe would be a good idea. There are only a few studies evaluating effects of exercise in IBM. They have all reported safety of light weight lifting and even more strenious exercise over 3 and 6 months. However, the results regarding the effects of exercise on muscle strength is more uncertain. I would recommend weight lifting.

  • Exercise with Flare

    Participant:

    Is there any benefit to exercising when active in a DM/PM flare, or is it better to wait until the CPK has returned to a normal level?

    Dr. Helene Alexanderson:

    We know that exercise adapted to disease activity and strength is safe, but we are not sure about the effect on for example muscle strength in active disease. However, exercise can redcue the risk of side effects from cortcosteroids. Therefor I would recommend to always exercise, but adapt the intensity to disease activity.

  • Recommended Exercises

    Participant:

    I am a 70 year old female diagnosed with polymyositis and dermatomyositis in January, 2011. I now take Prednisone, Mycophenolate, Actinol, Ramitidine, plus vitamins and minerals. My goal is to be able to sit in the bathtub to take a bath. What exercise regime would you recommend? A sheet of exercises, a book, or a DVD would be appreciated.

    Dr. Helene Alexanderson:

    I would recommend you to do strengthening exercises for your legs, foremost the quadriceps and gluteal area as well as for your upper arms. Use loads allowing about 10 repetitions.

  • Creatine

    Participant:

    I have recently started taking creatine in hopes of increasing muscle strength. What is your opinion of this drug for people with IBM?

    Dr. Helene Alexanderson:

    There are no studies on creatine in IBM, however, I have 2 patients in my clinic that experience some improvement of creatine in combination with exercise. Worth a try. Be sure to test your strength before starting and then do follow-up after 3-5 months.

  • Soreness

    Participant:

    I’ve lost most of my muscle but am decreasing meds (no active illness) and want to build up muscle again. A doctor once told me that I should NEVER exercise to the point of feeling sore because that’s an indicator of muscle decay. Is this true? How much soreness is acceptable and expected for muscle growth in myositis patients? And what sorts of easy exercises can I do at home to ease into exercising again?

    Dr. Helene Alexanderson:

    It is not harmful to exercise until the point of muscle soreness. We have seen that muscles do leak the enzyme CPK right after an exercise bout in myositis, but that is normal and will return to normal values after about 24 hours. This is a normal process. As long as you don’t experience muscle soreness over several days and improve your strength, I would not say it is harmful. I would recommend you to start with an easy home exercise program or in a pool.

  • Research on Exercise

    Participant:

    Please tell us what the research says about myositis and exercise? We routinely hear from patients that their doctors will not let them exercise… Many wait 3 or 4 years until their CPK reaches a magic point their doctor feels comfortable with. This is against all i have read by Dr. Ingrid Lundberg from Sweden and her research. I have exercised from the start and i am doing quite well.

    Dr. Helene Alexanderson:

    the evidence support exercise, starting about 4 weeks after diagnosis. However, exercise should be adapted to strength, fatigue and pain levels, be introduced carefully and slowly increase loads or intensity. We have done a few studies in active myositis with hight cortiocosteroid levels, and only seen CPK-levels dropping down to normal with medical treatment and exercise. Important to follow-up strength and well-being regularly, for example every third months during the first year.

  • Remission before Excercise

    Participant:

    How long must I be in remission before it is okay to resume my exercise program?

    Dr. Helene Alexanderson:

    You don’t need to be in remission to start extercie. it is safe to start adapted exercise after about 4 weeks from diagnosis under PT supervision and with regular follow-up.

  • Quadriceps from IBM

    Participant:

    I wonder if there is anything I can do to increase the strength in my other muscles to make up for the lack of strength in my quadriceps from IBM.

    Dr. Helene Alexanderson:

    I would recommend to exercise the hipmuscles, both abduction, extension and flexion as well as the backside of your thighs. Also exercise arms and trunk muscles.

  • Amount of Exercise

    Participant:

    Hello, I have had dermomyositis for the past 8 years. Right now I am going to the gym 4 or 5 days a week for about two hours, I do TRX three or four times a week, do an eliptical machine for 20 minutes, have an hour of spinining once or twice a week and work in the rowing machine. My question, is this a good program or will this be too much in the long run. And what kind of exercises will increase the strength of my flexors.

    Dr. Helene Alexanderson:

    You are very active with exercise. I would say that as long as you feel well and experience improvements from the exercise it is all well. However, if you feel that you are getting weaker over time and more fatigued that could be a sign of a flare. But that would necessarily not be due to the exercise, but can occur anyway.

  • Muscle Weakness and Weight Lifting

    Participant:

    Is it possible to build muscle with DM? I am a 59 year old female who used to lift significant weights regularly. Now it’s truly a challenge just to lift 3-5lbs. Particularly upper body. How’s the best way to get back into this?

    Dr. Helene Alexanderson:

    It is possible to improve strength when you have DM. Start with low loads and slowly increase. You need to exercise at least twice a week for at least 8 weeks to see some results. Then you just need to keep going.

  • Duration of Exercise

    Participant:

    How frequently should I work out with regards to weight? Cardio?

    Dr. Helene Alexanderson:

    To increase strength exercise 2-3 times a week and to improve cardio exercise 3 times a week during at least 30 minutes/session. You can combine these types of exercise in the same session.

  • Preventing Muscle Weakness

    Participant:

    I was originally diagosned with DM in 1998 but have been in remission from about 2000 until this past December. I am currently affected on my hands, but experiencing NO muscle weakness. Are there excerises that I should or should not be doing in order to prevent muscle weakness from occuring?

    Dr. Helene Alexanderson:

    No, just be sure to exercise 2-3 days a week.

  • Excercise for Knees

    Participant:

    Dr. Alexanderson thank you for participating in this discussion with us. I am in the early stages of sIBM (still very mobile, can walk for fairly long distances without any assistive devices, etc.) However I just had one of those wobbly knee sIBM falls last week while going down a flight of stairs when the knee on my weakest side folded under me and I landed hard on top of the foot and leg. Luckily only painful bruising of the toes and foot ligaments. I do a number of pool based and land based exercises prescribed by my PT to strengthen the core, the hamstrings, gluets and ankle & foot flexor to compensate for the quad weakness. Is there any particular type of exercise you would recommend to help us with that wobbly IBM knee flexor? Also is there any recommended limit on how far/long we should walk–other than the obvious of listening to when our muscles are telling us it’s time to stop? (Overly excited by the first nice spring days after a long cold winter I walked for 90 minutes/3 miles the day before I fell and 60 minutes/maybe 1.8 miles the day before that.)

    Dr. Helene Alexanderson:

    Listen to you body when it comes to exertion. Maybe better to take shorter walk more frequently. There is a home exercise program published by Johnson LG et al describing a home exercise program that would be worth while looking into together with your PT.

  • Exercise and Inflammation

    Participant:

    How do you measure the effects of exercise on inflammation? Was this measured in lab animals or people?

    Dr. Helene Alexanderson:

    We analyse CPK-levels in blood and muscle biopsies. We use a conchotome technique allowing multiple biopsies. MRI is another alternative and I believe that diagnostic ultrasound could be a way.

  • Frequency and Type of Exercise

    Participant:

    How often should I exercise — every day or every other day? Or different muscle groups each day?

    Dr. Helene Alexanderson:

    To improve strength, exercise 2-3 days a week on at least 40-80% of max and to improve aerobic capacity exercise at least 3 days a week on 50-70% of max heart rate. You can combine these exercise types in the same session. You do not need to exercise every day. Good to rest in-between.

  • Activity Level

    Participant:

    I have IBM. I am quite active in my yard and house, and walking the dog. Is this enough?

    Dr. Helene Alexanderson:

    I would say that this gives you physical activity enough to preserve good health. If you want to increase strength in less affected muscle groups you need to do more strength exercise.

  • p90x

    Participant:

    Would an exercise regiment like p90x be too extreme of an activity?

    Dr. Helene Alexanderson:

    Sorry, don’t know what p90x is.

  • Dealing with Pain

    Participant:

    Often I am in so much pain that it hurts to exercise, even walking, what could you suggest?

    Dr. Helene Alexanderson:

    Try exercise in a heated pool.

  • Yoga for Exercise

    Participant:

    I take yoga three times a week, and my teacher said just to modify the poses when I am feeling weak. Are there poses I should avoid?

    Dr. Helene Alexanderson:

    No, do any poses that you feel comfortable with.

  • Inflammation and Endurance

    Participant:

    Does having inflammation affect ones ability to improve endurance?

    Dr. Helene Alexanderson:

    I think you can imporve endurance although you have active inflammation, but it is necessary to have a working medical treatment as well to improve in the long run.

  • Regaining Muscle

    Participant:

    Polymyositis was diagnosed in 2005, couldn’t get in remission until 2009. I lost a great deal of muscle, despite exercise. Will I ever be able to regain it?Also, are Tai Chi or yoga recommended? If so what type of yoga are you suggesting?

    Dr. Helene Alexanderson:

    It is always possible to improve, but very few regain their strength completely.

  • Creatine Dose

    Participant:

    What dosage of creatine would you recommend?

    Dr. Helene Alexanderson:

    In our study we used 8 grams as a loading dose for five days and then go down to 3 grams. Hold that for 3 months and then take 4 weeks break. Be sure to exercise at the same time and follow muscle strength before and after.

  • Routine for PM

    Participant:

    Can you recommend a routine for someone with PM

    Dr. Helene Alexanderson:

    Start with low loads and increase slowly. Focus on shoulder, hip and thigh muscles 2-3 days a week for at least 8 weeks. Be sure not to do all arm exercises in a row, but do legs and neck in between.

TMA:

This concludes today’s discussion. TMA would like to extend a special thank you to Dr. Helene Alexanderson for spending the time to answer your questions. Thanks to all the members who participated.

Dr. Helene Alexanderson:

Thank you for having me. I hope that my answers were of some help.