Thursday, March 17, 2016 12:00 pm – 1:00 pm EST This discussion is archived.

Helene Alexanderson, RPT, is an associate professor of physiotherapy at the Karolinska Institute in Stockholm, Sweden, and a member of TMA's medical advisory board. Dr. Alexanderson presented several sessions on exercise at TMA's 2015 Annual Patient Conference and is an international authority on exercise for myositis patients, having published more than 50 research articles on the subject. We welcome Dr. Alexanderson to her second TMA live discussion.

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TMA:

Helene Alexanderson, RPT:

Thanks for having me!

  • Respiratory Therapist

    Participant:

    I am a 43 year old woman, with antisynthetase syndrome (anti Jo-1) and am in a remitting phase after significant muscle loss from polymyositis. I also am on the lung transplant list for Pulmonary Fibrosis and use O2 full-time. I attend Pulmonary Rehab to try and maintain/increase what lung function I have and the Respiratory Therapists with whom I work have no experience with myositis.

    I have a few questions for you today:

    1) When muscle is "wasted" from polymyositis, what type of skeletal muscle is typically effected (red/slow, red/fast, white/fast, all of them)?
    2) When that muscle is destroyed through polymyositis, can new muscle fibers be generated, or is it only possible to strengthen the remaining muscle fibers?
    3) Given that I am quite limited in both my strength and cardiovascular abilities, what kinds of general advice might you have for my Respiratory Therapist (who guides my Pulmonary Rehab) about what we should concentrate our work effort on: building strength, endurance, cardiovascular, stretching, resistance, something else?

    I know you aren't able to give me specific medical advice, nor are you intimately familiar with my case, etc. However, my Respiratory Therapist does not have ANY experience with a patient like me and I'd be grateful for ideas of tools, resources, suggestions, or guiding philosophies to bring to my work with him to maximize what we accomplish in our time together. Thanks for your consideration and assistance!

    Helene Alexanderson, RPT:

    Hi Annette, We have seen a lower number of slow oxygen dependent muscle fibers in quadriceps muscle in PM and DM. Exercise can activate satellite cells (baby cells that can develop into adult muscle fibers) and you can also increase the aerobic capacity of the existing muscle fibers. Intensive aerobic exercise can increase number of capillaries in muscle for example. I think you should focus on that physical function that is the most impaired. A combo of aerobic and resistance exercise could be good. Have your PT email me on helene.alexanderson@karolinska.se.

  • Home Exercise

    Participant:

    Intensive exercise has been shown to be anti-inflammatory. As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

    What exercises for sIBM can be done safely at home? I walk around our home with a walker--fell in late October, 2014, and fractured my left ankle in three places and had to undergo major surgery to put the ankle back together. Never regained my confidence to walk with a quad cane. I have a Stamina In-Motion Elliptical Trainer, Exerpeutic 7101 Active Cycle Mini Exercise Bike (for my hands and arms) and an overdoor exercise pulley, which I purchased a couple of months ago. Any recommendations on how to best utilize these three items in a exercise program at home? Thank you.

    Helene Alexanderson, RPT:

    Hi Valerie, I would recommend you to use the bike daily. A small study and my clinical experience suggest that frequent exercise could be beneficial in IBM. There is a speicific IBM home exercise program posted on TMA website that you could try.

    I would recommend to start up with a PT. Have hin/her email me on helene.alexanderson@karolinska.se.

  • Low Tolerance for Exercise

    Participant:

    My name is Leslie and I have PM since April 2004, I find that I have low tolerance for exercise. No matter what I try, swimming, walking, etc., severe fatigue sets in quickly and I must stop an rest. I'm at the point that doing light housework is about all I can handle, and after that I am very tired and need to rest. I do pace myself with the housework, which helps a little. I am currently off PM meds, for now. Is there some form/type of exercise you can recommend and that I can do at home. My PM leaves me with issues with my legs and shoulders and arms, weakness mostly. Thank you!

    Helene Alexanderson, RPT:

    Hi Leslie, There is a home exercise program that I have developed that can be adapted to any level of muscle weakness. If you email me on helene.alexanderson@karolinska.se I can send it to you. You should try to perform it five days a week.

  • Antisynthetase Syndrome

    Participant:

    What do you suggest for those with Antisynthetase Syndrome, when lung disease is a predominant feature and exercise intolerance is moderate to severe? This is the case for me and despite asking many professionals what their opinion is, I am simply referred to someone else or told to just do what I can. Since that really isn't much due to SOB and muscle pain, it's not much of a solution. Do you have any suggestions that might help? Thank you for addressing this topic!

    Helene Alexanderson, RPT:

    Hi Paula, I think you should start with daily walks, short in the beginning. I would recommend you to change speed in intervals, so that you start slow, then speed it up for a minute or two and then slow down again. Hopefully, you can increase the duration of the more intensive walking. This could be applied to any type of physical activity that you enjoy.

  • Rebuilding Muscle

    Participant:

    I'm 60 and I've had DM for 8 yrs now. I'm currently on 7 mg prednisone and my CKs are usually a little higher than average. I lost 3 inches in height because of the large dose of prednisone. (currently 4-10.5" 120 lbs) I have lost additional muscle the last year or so in my ability to go up stairs and get out of chairs. (I about crawl up the stairs and I have to be careful on how short chairs are that I sit in) Over the years I was told not to exercise till my CK was normal. I wish I had never stopped exercising.... Now I'm trying to fix it. It's hard to try too many new things because my back always "goes out". So I end up being too safe when it's time to exercise. I just did 4 weeks of water treadmill and it felt fine. I have started to itch the last two weeks (I've not had a huge problem with the DM rash and don't want something to start getting bad) so I cancelled the remaining appointments. I'm so hunched over because of the osteoporosis and I'm sure I've lost some supporting muscle for the spine. I'm trying to work on my nutritional (gut) health also. What can I eat or take to help my muscles rebuild also? Is there hope for getting better and what do I do? How do I start?

    Helene Alexanderson, RPT:

    Hi, I would have you start on frequent, but very short duration exercise on a low intensity. 15-minutes walks maybe. Then you can try to increase the exercise time.

  • Military Service

    Participant:

    This is a two part question. Can you still perform vigorous exercise like the Air Force Fit to Fight. And can you still be and/or do you know of anyone still the Military with an autoimmune. My background I have been in the military since 1996 active duty Army for four years the rest Air Force Reserves. February of 2015 I was diagnosed with polymyositis, which has barely affected my job in the Air Force Reserves. This past weekend I need to extend my profile because of a relapse I had in January due to medication. That's where everything went to hell, now the Air Force medical reserve side is trying to end my military career after 19 years. The sad part is that I am at my lowest weight and healthiest I have been in years despite having an autoimmune.

    Helene Alexanderson, RPT:

    Hi Mary, I don’t see that your PM would get in the way for your continued military service. I gather that you have been in good shape even after diagnosed. I think that you have good chances of regaining function again after the flare.

  • Joint Pain

    Participant:

    I have IBM (supposedly). When I started prednisone, the stiffness in my fingers and knees went away. Now that I'm off prednisone, it is coming back. Is there an arthritic component of IBM? Should I be taking NSAIDS?

    Helene Alexanderson, RPT:

    Hi Jennifer, It is not uncommon to have joint pain in IBM, however, probably not due to inflammation. Arthralgia and osteoarthritis is common.

  • Exercise with Antisynthetase Syndrome

    Participant:

    I can certainly see the benefit of exercise in myosotis, but what about in Antisynthetase Syndrome? There seems to be no real information out there for a person with both muscle and lung disease that is made worse with activity. I'm afraid being told "just do what you can" isn't terribly helpful. Do you have any opinions or suggestions?

    Helene Alexanderson, RPT:

    Hi Paula, You can exercise with antisytnhetase syndrome even if you have lung involvement. You can do both aerobic and resistance training, only adapt exercise to your current lung capacity. have a PT assess your aerobic capacity before you start.

    As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

  • Physical Therapy

    Participant:

    I have had PM for almost 11 years now but have never had Physical Therapy until now! I have been at it 3 weeks now and do see some improvements but there are many days when I am concerned that the PT is doing some damage, is it possible to do core muscles PT and build up the muscles that are left or am I doing more harm. My balance has been off and I have NO strength in the thigh muscles. I showed the Therapist a pamphlet that explains PM but am not sure if I got through to her! And can therapy twice a week raise the CPK?

    Helene Alexanderson, RPT:

    There are many studies in PM and DM, although small, but they all confirm safety of exercise. On the contrary, intensive resistance exercise and /or aerobic exercise could even be anti-inflammatory.

    You should start vid low-intensity exercise and slowly increase duration and intensity. I would recommend to somehow measure your muscle function and/or aerobic capacity before you start and be guided by a physical therapist in the beginning. As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

    Guidelines for exercise are similar to healthy only that you need to start on a lower level and always adapt what you are doing to disease activity, muscle strength, fatigue or pain.

    There are several exercise programs posted on the TMA web. Show them to your PT and ask him/her to search Youtube for Functional Index 2 myositis.

    This is a disease-specific measure of muscle endurance. Your pt can email me on helene.alexanderson@karolinska.se.

  • Low Impact Exercise

    Participant:

    I am having DM, PM since last 2 years. I was on steroids and methotrexate for some time. But i noticed that when i reduced steroids below 15 to 20 mgs per day i would get recurrence of symptoms like fatigue, cramps on climbing. I had a bout of viral fever last winter which was pretty bad and lasted for long for about 3 to 4 weeks and during this time i had lost quite a bit of my body weight. Also my sugars went up, so i tapered and stopped steroids and methotrexate. Currently i am just taking hydroxychloroquine and multivitamines. I am having arthritis, polyarthralgia specifically during winter which made it very difficult for me to do any kind of exercise. Now i notice that my joints get stiff if i sit in a chair for long time or early in the morning. After long walk or work, joints do become painful. What kind of exercise you would recommend to me, how often and for how long.

    Thanks and best regards.

    Helene Alexanderson, RPT:

    Hi Deepak, I would recommend you to do low-impact exercise. Long-term treatment with cortisone can make muscle and bone fragile. Start with walks or biking nad make sure to walk in a speed that raises your heartbeat for at least 20 minutes 3 days a week.

    Then perform resistqance training on a load that allows 20 repetitions. Start on a low level.

    As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

  • Stretching or Strengthening

    Participant:

    When I exercise my quads for IBM, should I concentrate on stretching the muscle or strengthening the muscle by tensing the muscles?

    Helene Alexanderson, RPT:

    Hi Yvonne, You should focus on resistance training for your quadriceps. There is a specific home exercise program for IBM postes on TMA website including exercises such as standing up from a high chair, knee extension. Stretching is also good to kkep your muscle length, but will not improve your muscle function.

  • Weakening of the Joints

    Participant:

    I was diagnosed with DM one year ago at age 55. I have always been physically active, averaging 10-13 hours weekly of spin, yoga, step, weight lifting and boot camp classes. Onset of DM symptoms was sudden and muscle weakness extensive but diagnosed quickly, and responded well to prednisone and methotrexate. I resumed exercise 5-6 months after diagnosis and currently enjoy all my activities at the same level as before. The muscles in my quads were the slowest to recover and although I seem to have regained my strength, I am bothered by painful knee joints which I never had prior to DM. Can DM directly or indirectly cause weakening of these joints and are there specific exercises to strengthen the leg muscles without damaging the joint? Or exercises you shouldn't do to aggravate the joint?

    (PS I have tapered off Prednisone and continue to be stable on 20 mg methotrexate weekly. Feeling very blessed.)

    Helene Alexanderson, RPT:

    Hi Norma, DM targets the thight muscles resulting in muscle weakness. If your muscles are weak, there might be a strain on your knee joints. Exercises that could strengthen your thighs are: biking, working out in leg press, functional exercises such as standing up from a chair, walking stairs or up hill. You should be careful with high-impact exercises such as jumping or running.

  • Neck Exercises

    Participant:

    I am in remission from polymyositis...however, my neck muscles continue to be so weak that at the end of the day, it is difficult to hold up my head. Can you recommend specific neck exercises to help with this problem? Thank you.

    Helene Alexanderson, RPT:

    Hi Cindy, Try to lay down on your back with or without a pillow. Lift your head as much as you can and then try to hold it for 5-10 sec. Repeat 5 times. Do this daily.

  • Mitigation Plan

    Participant:

    I have IBM and my deterioration is outpacing my occupational therapist recommended exercise program . Flexor muscles in hands and feet are not functioning and I have some residual strength in my arms. Looking for any mitigation plan.

    Helene Alexanderson, RPT:

    Hi Florian, There is a specific IBM home exercise program posted on the TMA website that you should perform twice daily.

  • Purpose of Exercise

    Participant:

    Does one grow new muscle cells/tissue with exercise, or is the purpose to strengthen what is left after a polymyositis flare?

    Helene Alexanderson, RPT:

    Hi Barbara, It depends on intensity and type of exercise if you will build new muscle. Easy-to moderate exercise can increase number of type 1 endurance muscle fibers. But you need more intensive exercise to increase muscle fiber size.

  • Rehab Exercise

    Participant:

    I spend one hour everyday focusing on rehab exercises I learned from PT, am I overdoing it?

    Helene Alexanderson, RPT:

    As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

  • IBM Exercise Frequency

    Participant:

    Why should IBM patients exercise more frequently (2 times a day) than patients who have PM or DM (3 times a week)?

    Helene Alexanderson, RPT:

    Hi sandy, Good question. I don’t know. I have only seen form one study and my clinical practice that those that exercise twice a day have improved in function.

  • Balance Exercises

    Participant:

    What are the best exercises to strengthen the quads? What are the best exercises for balance especially when you have anxiety about falling? In walking for exercise what walking aids can be used to promote stability, balance, and reduce the anxiety of falling?

    Helene Alexanderson, RPT:

    Hi Charles, Balance exercise can be performed on many levels. I would recommend you to get exercises from a PT. Sitting and/standing.

  • Daily Exercise

    Participant:

    I exercise daily, is that too much exercise?

    Helene Alexanderson, RPT:

    Hi Renee,  As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

  • Creatine

    Participant:

    I have had DM for 2 years. Recently (2 mos) my exercise goal consist of walking on the treadmill for 30-45 minutes 3 times a week. On the days I do not walk, I try to lift weights (2 lbs.) to work on strengthening my arm muscles. I also stretch in the evenings. On some days, exercising is a struggle due to my fatigue. What is the risk of pushing through the fatigue to get in the exercise? Also, what about core strenghting exercises? What are your thoughts on taking creatine? I'm so happy to be able to participate and sorry for so many questions.

    Helene Alexanderson, RPT:

    Hi Tina, Creatine could be one way to go. Be sure to assess your muscle function before you start and that you take the appropriate dose. If you email me on helene.alexanderson@karolinska.se I can send you the dosage program. After 3 months, assess your muscle strength again.

  • Muscle Loss

    Participant:

    Is the purpose of exercise for an IBM patient to slow down muscle loss or can I expect to actually regain muscle strength?

    Helene Alexanderson, RPT:

    Hi John, If you do the IBM home exercise program there could be an improvement. With other programs the outcome is more unsure.

  • Blood Flow Restricted Resistance Training

    Participant:

    What are your thoughts on BFRRT (Blood Flow Restricted Resistance Training) for IBM patients. Have you seen any results from the University of Southern Denmark trail for IBM patients?

    Helene Alexanderson, RPT:

    I think this is a very interesting approach. I have not yet seen any formal results from Denmark, but have heard from the PI that the study won’t show a difference between the exercise and control groups. Although the program seems safe.

  • Strength Building Exercises

    Participant:

    What are the best strength building exercises for IBM patients? How often should you do them?

    Helene Alexanderson, RPT:

    I would recommend exercise daily or twice daily. Knee extensions, standing up from sitting for example.

  • Unable to Exercise

    Participant:

    I have sIBM, diagnosed 2012. Soon after I developed a group of exercises that are posted on TMA site. I am not now able to perform most of the exercises. What does the future hold for me?

    Helene Alexanderson, RPT:

    Hi James, It is not possible to tell how the disease will progress in the future. My hypothesis is that exercise will slow the progression of muscle weakness down. Try to keep on exercise, adapt exercises to your current muscle strength. Short sessions but often.

  • Types of Exercise

    Participant:

    What is the current recommendation for types of exercise (and the amount) for people with IBM? In the past, I have been cautioned not to "overdo" past the point of mild fatigue.

    Helene Alexanderson, RPT:

    Hi John, The program that has been most efficient to improve function is the IBM home exercise program posted on the TMA website. Frequent exercise.

  • DM Exercise Amount

    Participant:

    I have had DM for 4 years. I am taking takeing 200 mgs of Imuran in the mornings. I walk 3 - 4 times a week, weather permitting, and use my treadmill occasionally. I have a big problem with shortness of breath and some discomfort in the abdomen region. I have had pulmonary function tests and they are ok. Also been checked for heart problems. Also ok. How much exercise should I be doing? and what would you recommend that could be causing my problems. Thank you.

    Helene Alexanderson, RPT:

    Hi, Try to start with walks at least 3 says a week. Try to walk fast so that you increase your heart rate. You can change your speed so you walk faster for a few minutes and then slow down. Try to increase the time for the faster walks. This can be adapted to any physical activity that you enjoy.

TMA:

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

Helene Alexanderson, RPT:

Thanks for having me.