Tuesday, November 14, 2017 12:00 pm – 1:00 pm EST This discussion is archived.

Lori A. Love, MD, PhD worked for many years with the National Institutes of Health (NIH) and Food and the Drug Administration (FDA) at both the Center for Food Safety and Applied Nutrition and The Center for Drug Evaluation and Research. She has a special interest in both integrative health care and the idiopathic inflammatory myopathies. She also lives with myositis herself, so she has firsthand experience with the signs, symptoms, treatments, and frustrations of living with myositis. Please join us in welcoming Dr. Love to today's Live Discussion.

Ask a Question
TMA:

Lori A. Love, MD, PhD:

I thank The Myositis Association for asking me to participate in this learning session with you today. One of the things that struck me as I was reviewing the area for this session is how little scientific progress has been made, particularly as it relates to myositis. And as you are no doubt aware, products marked as complementary are, for the most part, regulated very differently than traditional drugs, which are reviewed and approved by the FDA based on their safety and efficacy in a particular disease. So, there is much we don't know about the safety profile of complementary products. Given the severe limitations of research in this area, it is important for patients to participate in clinical trials of these products so we can gather the information to use these therapies safely and effectively. To find research studies for which you may be eligible, you can call the NIH patient referral number at 1-800-411-1222, (TTY 1-866-411-1010). Another good place to look is at clinicaltrials.gov https://clinicaltrials.gov/ where you can do searches by disease or condition and other terms, such "botanical" or a particular ingredient or therapy.

  • Diet

    Participant:

    I have been affected by polymyositis for 10 years and was wondering if there are any benefits of being on a special diet (gluten-free or diminished sugar) for the myositis?

    Lori A. Love, MD, PhD:

    There is a fair amount of genetic overlap with the genes associated with gluten-sensitive enteropathy, also known as celiac disease, and other autoimmune diseases, including inflammatory myopathies. Furthermore, it has been reported that up to 25% of patients with an autoimmune disorder have or develop both disorders at some time in their disease course. In these patients controlling gluten in the diet is critical, as it can have a marked effect on signs, symptoms and/or severity of disease. There are anecdotal reports of gluten sensitivity in myositis, whereby any contact with gluten causes flares in the patient’s muscle disease and increased symptoms, and maintaining a strict gluten-free diet improves symptoms. Given these findings, it might be reasonable to explore a gluten-free diet to see how your disease responds.

  • Implementation of Supplements

    Participant:

    I have always read and heard that there are no treatments for IBM. I was diagnosed in 2010 with IBM. At that time I started on a "Mito Cocktail" [a variety of vitamins and supplements used by those who have been diagnosed with mitochondrial disease], including CoQ10, along with regular waking and a healthy diet. It has been seven years and I have not seen much progression in my disease and no further atrophy. I was wondering if there have been observations similar to mine with implementation of supplements for IBM over the years.

    Lori A. Love, MD, PhD:

    Sporadic IBM (s-IBM) is a heterogeneous disease category and is partly confused by the use of the term IBM to refer to multiple entities, including inflammatory inclusion body myositis and other non-inflammatory forms of inclusion body myopathy. These distinctions are important because these different types of IBM may require different therapies or show different patterns of progression.

    Empiric therapies of coenzyme Q10 (CoQ10), carnitine, and other antioxidants have been given based on the findings of mitochondrial abnormalities in IBM. CoQ10 is a vitamin-like compound synthesized by the body and obtained from dietary fat. Another name for CoQ10 is ubiquinone. There are anecdotal reports that supplementation with CoQ10 has been beneficial in some patients with IBM, but these cases do no distinguish between inflammatory inclusion body myositis and non-inflammatory inclusion body myopathies. There are no well-designed clinical studies that have evaluated this in IBM as a group. The results of studies evaluating the effects of CoQ10 on statin-induced myopathy have been equivocal (one study showing a positive effect, which was not seen in other studies).

  • Anti-Inflammatory Compounds

    Participant:

    What are your thoughts about anti-inflammatory compounds derived from natural products for myositis? Compounds such baicalin and catechins that are known to have anti-inflammatory function and have been used in some countries as drugs for inflammation.

    Lori A. Love, MD, PhD:

    Baicalin, a constituent in Scutellaria species such as Chinese Skullcap, is one of the components in certain traditional Chinese medicine formulations. In vitro (in the test tube) and animal studies have shown that this has a number of different mechanisms of action, including those on certain components of the immune system. I find no data that this has been studied in humans for any disease.

    Catechins are a type phytochemical called flavonoids that have antioxidant properties. Tea and coca-derived products are rich in catechins. The effects of catechins are now being explored in a number of human diseases and conditions. Although there are a number of preliminary ongoing or proposed studies of catechins in some types of muscular dystrophy, the results of these studies are not yet published. The effects of these compounds has not yet been studied in myositis.

  • Ankylosing Spondylitis

    Participant:

    Thank you for this presentation. I have DM (diagnosed in 2016) and receive monthly HD IVIg. In addition, I have ankylosing spondylitis. Based on the work out of King's College many years ago and more recent revelations into the gut microbiome, I ate a very low starch diet for years in an effort to manage ankylosing spondylitis. Now I am concerned that the low-starch approach may not be beneficial for the DM, because of the muscles' need for glucose. I do exercise according to Dr. Helene Alexanderson's protocol for myositis. Please comment on your thoughts regarding carb needs and muscle stress/recovery.

    Lori A. Love, MD, PhD:

    The current thoughts on the optimal diet is to consume a varied diet with the appropriate mixtures of protein, carbohydrate, and fat. This will depend on your health status, including any disease activity. If you haven’t done so already, I would recommend that you consult with a licensed nutritionist to evaluate your particular circumstances and dietary needs.

  • Supplements for Symptoms

    Participant:

    I am a 59-year-old female who was diagnosed a year ago with antisynthetase syndrome. I am taking 150mg of azathioprine daily, and I am currently taking glucosamine, K-2, curcumin, Ultra Vitamin C, D-3, B12, magnesium malate, and Pro Bono packets (for osteopenia). I have very few symptoms at this time but would like to know if there are any other supplements you recommend should my symptoms flare up again?

    Lori A. Love, MD, PhD:

    As I mentioned in other responses here, there are little to no scientific data on the proven clinical effects of dietary supplements in myositis, other than for a few selected vitamins and minerals. There are anecdotal reports of certain supplements being used in myositis, with a stated beneficial outcome, but there is no way to validate these individual case reports or even understand the conditions of use (the particular product used, its ingredients, and the dose, frequency, and duration of use). We need better scientific data in this area to inform our decisions and choices.

  • Diet and Autoimmune Diseases

    Participant:

    Dr. Gundry's book, The Plant Paradox, discusses how eliminating lectins from our diet can reverse autoimmune diseases. What is your findings on diet and autoimmune diseases? Is there a particular path you recommend regarding diet?

    Lori A. Love, MD, PhD:

    Specific dietary interventions have not been systematically investigated in well-controlled studies in myositis. However, published scientific studies in other chronic disorders and autoimmune diseases indicate that dietary habits can have a crucial effect on human health and disease. In autoimmunity, these studies have mainly focused on patients with rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE or lupus). Diet effects the gut microbiome through a variety of mechanisms we are just starting to understand, and we know that there are gut–immune system interactions. Diets high in saturated fats, salt, meat (particularly red meat), and sugar are now known to be pro-inflammatory. Diets rich in omega 3 fatty acids are anti-inflammatory and have resulted in improved disease activity in lupus and RA, as well as in animal models of these diseases.

    Because of these results in other autoimmune diseases, it is reasonable to expect that dietary habits would have an effect in myositis, and that controlling certain dietary components may be beneficial to patients. Studies are needed to address this in myositis, both to understand what dietary components may be important, in what patient clinical groups (idiopathic inflammatory myopathies are a heterogeneous group of muscle disease, thus there may also be differences in dietary factors and influences among the clinical or autoantibody groups), and at what dosage and frequency of use that specific dietary interventions might result in clinical improvements.

    There is a nice review of nutrition and myositis on the TMA website: https://www.myositis.org/storage/documents/2013_conference_presentations/TMArevised916.pdf.

  • Lifestyle Changes

    Participant:

    Over the past 10 months, I have been meditating, taking low dose naltrexone and CBD oil [cannabidiol hemp oil]; have removed my mercury fillings and detoxed heavy metals; addressed leaky gut issues; am not eating soy, corn, gluten, sugar, and chemicals, and I have seen a big change in my symptoms. Can you speak about your experience with these kinds of simple (but maybe not so easy) approaches to dealing with DM?

    Lori A. Love, MD, PhD:

    I am happy that you have found something that appears to work for you. One of the issues we all struggle with is how to personalize our medical and health care so that we are more in control.

    For me, it has been an ongoing learning experience with lots of trial, errors, and subsequent modifications over time. I do work with my rheumatologist and other doctors, make sure I take my medications as prescribed, and use their other health recommendations, such as sun screen and protective clothing, healthy diet, supplemental calcium and vitamin D, physical therapy as needed, exercise as tolerated, get adequate sleep, etcetera. I have explored many different complementary approaches over time (traditional Chinese medicine, acupuncture, dietary changes, and many mind-body approaches). I typically eat primarily a plant-based diet that is low in saturated fats, salt, and sugar, and try to avoid very processed foods. Stress is a real issue for me and is associated with flares and increased symptoms. I find that approaches that help me control my stress level are very beneficial, and I use yoga, meditation, and self-hypnosis to help control stress and the pain associated with dermatomyositis/lupus overlap syndrome.

  • Food Supplements

    Participant:

    What are your best recommendations for food supplements?

    Lori A. Love, MD, PhD:

    Dietary supplement recommendations are always a difficult and complex issue. There are the obvious ones—calcium and vitamin D—where there is scientific evidence of benefits in autoimmune diseases similar to inflammatory myositis, as well as other health conditions. Good quality scientific data are lacking for the efficacy of other supplements in myositis, and there are issues of product identity and quality that are difficult to assess. But the effects of isolated, high potency nutrients and other substances given as dietary supplements have not been shown to date to confer the same benefits as these nutrients in whole foods, perhaps because of fiber and other constituents in whole food. There is also the issue of potential adverse effects with dietary supplements and other natural products and drug interactions, so it is really important to inform your doctors and work with them if you want to try these products.

    That said, there are certain products marketed as dietary supplements that you should probably not use because of reports of disease exacerbations in myositis, increased muscle symptoms, and enhance autoinflammatory responses. These include red yeast rice given as a cholesterol lowering substance (contains the same chemical as lovastatin and has been associated with myopathy), high dose creatine supplements (may cause myopathy or disease flare), tryptophan (may cause myopathies), echinacea and other immunostimulatory products, such as Spirulina and blue-green algae (associated with myositis flares).

  • DM Diet and Exercise Program

    Participant:

    Where can I find the best diet and exercise program for dermatomyositis? Is there an integrative doctor in North Carolina that specializes in this area?

    Lori A. Love, MD, PhD:

    I don’t have a specific recommendation for a practitioner in North Carolina, but in searching the internet I found that the University of North Carolina at Chapel Hill has a Program on Integrative Medicine in their Department of Physical Medicine & Rehabilitation. This link lists the services they provide: and may be a good area to start your search: https://www.uncmedicalcenter.org/uncmc/care-treatment/integrative-medicine/

  • Hemp Oil

    Participant:

    Can you advise if hemp oil is a good addition to CellCept and prednisone. I have no pain just itching.

    Lori A. Love, MD, PhD:

    The medicinal efficacy of hempseed (Cannabis sativa L.), which is rich in polyunsaturated fatty acids, in atopic dermatitis, inflammation, and rheumatoid arthritis (RA) has been suggested from historical reports. Hempseed has been used as a treatment for these diseases in Asian folk medicine, and there are many anecdotes found on the internet touting the benefits of hemp seed oil for dermatologic conditions. Scientific research into the effects of hemp seed oil on dermatologic conditions is still sparse.

    The efficacy of dietary hempseed oil in patients with atopic dermatitis was studied in a single blind crossover 20-week study. The results indicated significant changes in plasma fatty acid profiles and improved clinical symptoms of atopic dermatitis in those treated with hemp seed oil. The suggestion was that these improvements resulted from the balanced and abundant supply of polyunsaturated fatty acids in this hempseed oil, as has been seen with the use of certain other plant oils in these conditions.

    One of the issues in trying to evaluate and compare products and studies on using hemp seed oil is what specifically is the product that was used for the study and do the results generalize to other products with the same name. The specific chemical composition of hemp seed oil depends on numerous factors: the specific seed cultivar used, the soil and other cultivation conditions, how the oil is produced, analyses of known constituents, and other contaminants. This is also an issue with other plant-derived products. There are reports of positive drug screens in those using hemp seed oil, and analyses of products, including those stated to be THC-free, have indicated the presence of measurable amounts of THC and other cannabinoids in some products.

  • Lauricidin Supplement

    Participant:

    I was diagnosed with dermatomyositis in 1969 at the age of 16. I had not experienced a flare or taken any medication for 45 years. However, this August the dermatomyositis became active again. I do not know the trigger. I am researching more natural approaches such as diet, exercise, and supplements. I have been reading lately about the benefits of Lauricidin for a healthy immune system. Do you recommend this supplement for dermatomyositis patients?

    Lori A. Love, MD, PhD:

    Lauricidin is a dietary supplement that contains monolaurin, a chemical made from lauric acid, which is found in coconut oil and breast milk. Monolaurin has shown antibacterial and antiviral effects in in vitro studies (in test tube- and culture dish-grown cells), and is currently being explored for its usefulness in clinical settings. There are no studies of its potential effects in myositis.

  • Gut Microbiome

    Participant:

    What can you tell us about the work being done with gut microbiome and its impact on myositis?

    Lori A. Love, MD, PhD:

    Diet effects the gut microbiome through a variety of mechanisms we are just starting to understand in general, and we know that there are gut-immune system interactions. It is reasonable to assume that the gut microbiome might be important in myositis. However, studies have not yet been done in myositis to explore potential effects and how the microbiome might be manipulated to improve the health of patients with myositis. It will be very interesting to see how research in this area unfolds for myositis.

  • Hypnosis

    Participant:

    Can hypnosis actually heal physical disease? Is there any value to using hypnosis for someone with myositis? What should I look for in a practitioner?

    Lori A. Love, MD, PhD:

    I am unaware of scientific studies that prove hypnosis can cure any physical disease. Hypnosis has been shown to be helpful with stress, which can be a huge factor driving signs and symptoms in many diseases, including myositis and other autoimmune disorders. It is also beneficial in pain management, again an issue for those with myositis. As I mentioned in an earlier question, I personally find that approaches that help me control my stress level are very beneficial, and I use yoga, meditation, and self-hypnosis to help control stress and the pain associated with dermatomyositis/lupus overlap syndrome.

  • Alternative Therapies

    Participant:

    I like to use alternative practices to stay healthy, but I don't always tell my doctor about this because I'm afraid he will be skeptical. What are your suggestions for working together with a more mainstream practitioner who doesn't "believe in" alternative therapies?

    Lori A. Love, MD, PhD:

    An issue for many in mainstream medicine is the lack of scientific evidence showing benefits of particular complementary approaches for diseases, including myositis. This is because they know that many mainstream approaches fail when they are studied with scientific rigor. Drugs shown not to be safe and/or effective are removed from the market by the FDA, but this is not the case for dietary supplements and other botanical products. That is not to say that a particular product might not help a particular condition or symptom. As the data accumulates for complementary and alternative approaches, these treatments can become part of mainstream healthcare. I would urge you to continue trying to discuss this with your health care provider in an open manner when you want to try “something else” to help your disease.

  • Functional Medicine

    Participant:

    What is functional medicine, and how can it help someone with myositis?

    Lori A. Love, MD, PhD:

    Functional medicine is a form of alternative medicine, which proponents say focuses on interactions between the environment and the gastrointestinal, endocrine, and immune systems. Treatments will generally be those not supported by traditional medical evidence (well-controlled clinical studies). I know of no data supporting the use of various treatments covered under the umbrella of functional medicine for myositis.

  • Autoimmune Disorder

    Participant:

    My neurologist told me at my last visit that sIBM is not an autoimmune disorder. That seems contradictory to everything I've read. Could you share your opinion/view, please? Is inflammation part of the sIBM diagnosis? Is this bad, because it doesn't shut off, thus causing more destruction? If so, what do you suggest to reduce this inflammation? Do you recommend getting a flu shot if you have sIBM?

    Lori A. Love, MD, PhD:

    Rheumatologists and neurologists do look at these diseases a bit differently. Sporadic IBM (sIBM) is a heterogeneous disease category and is partly confused with the term “inclusion body myopathy,” which refers to multiple entities, including inflammatory inclusion body myositis and other non-inflammatory forms of inclusion body myopathy. That there is an inflammatory or autoimmune component to inclusion body myositis has been shown by multiple lines of evidence, including clinical studies that show activated T cells are found in and around involved muscle cells, and patients with sIBM share genetic risk factors with polymyositis and dermatomyositis. Recently, certain autoantibodies have also been found that are associated with inclusion body myositis. There is debate as to whether inclusion body myositis should be treated with immunosuppressants, but anecdotal reports and some clinical trials indicate that immunosuppressives may be useful, so this is something that you may want to discuss with your doctor.

    Current data do not suggest an increased risk with influenza vaccine for patients with autoimmune diseases, unless there are allergies/sensitivities to the components. Any decision to get the vaccine should be made after discussion with your physician about the particulars of your disease.

  • Integrated Healthcare Approaches

    Participant:

    What integrated healthcare approaches do you recommend specifically for IBM patients?

    Lori A. Love, MD, PhD:

    I don’t know of specific approaches only for IBM, but there are general approaches that could apply to myositis in general. These include taking your medications as prescribed, follow your doctor’s other health recommendations, eat a healthy balanced diet, take supplemental calcium and vitamin D, physical therapy as needed, exercise as tolerated, get adequate sleep and rest, manage other co-morbidities (conditions such as hypertension, diabetes, heart disease, and depression) that affect your health, and manage stress and expectations. I would add having something in your life that brings you rewards or pleasure, be it hobbies, friends, family, or your dog, can also be very helpful.

  • Full-Body Massage

    Participant:

    What is your opinion about full-body massages for IBM patients?

    Lori A. Love, MD, PhD:

    Massage has not been systematically investigated in well-controlled studies in myositis, including IBM, although many patients appear to use this and benefit from it.

    A number of clinical studies have evaluated the effects of massage in athletes after intense exercise, where increases in CK levels and muscle pain and soreness are seen. These studies indicate that massage has improved post-exercise performance and recovery rates from pain, soreness, and stiffness.

    There are also a number of clinical studies performed in patients with fibromyalgia, where muscle pain and soreness are prominent. These studies have generally shown an increase in quality of life measures after massage with improvements in pain and anxiety. A meta-analysis (a statistical review of certain published studies to systematically assess the results of previous research to derive conclusions about that body of research) of massage in fibromyalgia indicates that the type of massage may influence the effects seen. There are preliminary studies looking at the effects of massage on many other human disorders, including multiple sclerosis and various types of muscular dystrophy. It will be interesting to see what the results of these studies show.

    One of the proposed mechanisms of action by which massage works, is through attenuation of the inflammatory process, which is initiated by muscle injury. By altering signaling pathways and cytokine production involved with the inflammatory process, massage may decrease secondary injury and nerve sensitization, resulting in increased recovery from damage and reduction or prevention of pain. These studies been conducted in tissue cultured muscle cells and animal models of muscle injury, so the findings need to be extended to human investigations.

  • Exercise Regimen

    Participant:

    I am a 67-year-old woman diagnosed with IBM nine years ago. Within the last three years, I have fallen twice, resulting in two fractured ankles requiring surgeries. I now use a walker 24/7 to minimize falls, but am still active, mobile, and independent. I attend a weekly chair yoga class and a weekly chair exercise class (mostly for upper body strength), use a recumbent bicycle several times a week, and go for 30- to 45-minute walks as often as possible. I also get monthly massages. I used to go to an aquatics class but no longer do so due to the concern of a using a walker in a locker room. What else would you suggest to add to this regimen?

    Lori A. Love, MD, PhD:

    I commend you for staying so active! Studies in dermatomyositis and polymyositis have shown that graded exercises performed under the guidance of a physical therapist have beneficial effects, and this has now become a component of mainstream treatment for myositis, including IBM. If you have not yet been evaluated by a physical therapist you might consider this, as they can identify any weaknesses of specific muscle groups that you have and suggest exercises that could help this.

  • Avoiding the Sun

    Participant:

    My DM skin issues have never been significant (shawl sign, itchy scalp). Is avoidance of the sun important for DM patients who aren't bothered by rashes?

    Lori A. Love, MD, PhD:

    Ultraviolet light can activate the immune system, as has been shown in myositis and lupus. So it is important to have protection against the effects of the sun by using sunscreen and protective clothing. For me personally, sun is very much an issue, even when I don’t have the typical rashes of DM, and sun exposure results in increased symptoms. So I practice strict sun protection.

TMA:

This concludes today's discussion. Dr. Lori Love, it has been a pleasure having you join us to answer TMA member questions. Thank you to all the members who participated.

Lori A. Love, MD, PhD:

It was my pleasure having this discussion today, I hope it has been helpful.