Our article about immune boosting supplements raised many questions about the effects of herbal products for those who live with myositis. Such products have been heavily promoted in recent years as remedies for all manner of maladies, including viral and other infections such as colds, flu, and COVID 19.
While little or no research has been done on most alternative treatments and rare diseases, that’s not the case for immune boosting supplements. When TMA medical advisor Dr. Victoria Werth started noticing a connection between these products and an increase in her patients’ symptoms, she started looking into how products such as blue-green algae, echinacea, ashwagandha, elderberry, spirulina, and chlorella work in the body. She learned that they do, in fact, affect the immune system in ways that can cause a flare of dermatomyositis symptoms.
Read the results of Dr. Werth’s research on DM and immune-boosting supplements:
Frequency of immunostimulatory herbal supplement use among patients with autoimmune skin disease
Nevertheless, there is still a lot we don’t know about how herbal supplements might affect those with myositis. For example, because she is a dermatologist, Dr. Werth has only explored the effects on dermatomyositis and autoimmune skin disease. So while there may be similar effects for other autoimmune diseases, such as polymyositis and necrotizing myopathy, we don’t know for sure because the studies have not been done.
We also don’t know what the effects of using immune-boosting supplements might be for inclusion body myositis. IBM is different from other forms of myositis in its symptoms as well as its biological underpinnings, and studies have not yet been done to explore these relationships.
We are also not aware of studies exploring the effects of other supplements on myositis diseases such as vitamins, minerals, omega 3 fatty acids, and probiotics. Many supplements, such as vitamins C, D, E, zinc, selenium, and omega 3 fatty acids, have been shown to affect the immune system and can be beneficial if you have an infection. We don’t know whether these immune system effects will cause flares in myositis diseases, however, because they have not been studied with people with myositis (and possibly other autoimmune diseases).
Dr. Werth suggests that even if you have an infection that is not related to myositis, it’s best to avoid immune-boosting supplements, because they will affect your whole immune system, including your muscles or skin.
Vaccines
Our article also raised questions about herbals supplements and vaccine use. While we are not aware of any research connecting these two practices, a large study called COVAD (COVID-19 Vaccination in Autoimmune Diseases) has explored vaccine effects on those with myositis and other autoimmune conditions.
The study suggested that patients with active dermatomyositis may be at slightly higher risk for adverse effects of the vaccine. It also suggested that those with IBM may be at lower risk when it comes to vaccines. The authors conclude, however, that the benefit of preventing severe COVID-19 through vaccination likely outweighs the risk of vaccine-related adverse effects.
Remember you are a snowflake! Supplements and vaccines are treatments whose effects can vary widely among individuals. You should always consult your healthcare practitioner before starting any new treatment. And be sure to let your practitioner know if you are taking any over-the-counter medications, including supplements.
Thanks for the info. I believe that the COVID-19 vaccine flared up my Antisynthetase Syndrome. I’m currently taking vitamin D3 daily, and eat Brazilian nuts or pineapple (selenium) every other week or more, and consume salmon and flaxseeds (omega 3 fatty acids) twice a week without incident or flare ups. I guess using these things in moderation is the key, well except for the daily dose of vitamin D 3.
I have DM and had a significant flare starting 4 days after the 2nd Covid vaccine which required large doses of Prednisone. My Neurologist reported this to Pfizer. My understanding is the mRNA vaccines specifically target the interferon arm of the immune system.
Hi my name is Alan Hughes I suffer from IBM i was diagnosed i 2021 my Question my consultant advised me to take 1000mg a day of vitamin D and multivitamins i also take omega 3 one a day is this safe every day thanks
Alan, we can’t give you medical advice, but if your healthcare provider recommends these, they’re probably safe. From what we know, these supplements are frequently recommended and are not the sort of immune activating products Dr. Werth discusses.