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Newsletter August, 2021
What's in this Newsletter
by Nurse Jill
Current Immune Response to Vaccination
My dear friends, this article may be hard to read, especially if you (like myself) would like to travel internationally when our borders finally open up. However, it is vitally important to know where we all stand, as a cohort of immune-compromised people. The vaccine clinical trials excluded nearly all immune-compromised people because including them might interfere with determining vaccine effectiveness for the general population. But that has left our group with little data on what vaccination means for us. Now studies are trickling in.
It appears, in a small study published this month, that most immune-compromised people after having 2 mRNA vaccines, had very low and almost no, in some cases, antibody response. Factors that might affect someone’s response to a vaccine include the medication they’re taking and what it does, how long they’ve been taking it, their specific disease, and their history of infection.
The drugs that appear linked with the poorest response include Rituximab (treats some blood cancers and autoimmune diseases like rheumatoid arthritis), Belatacept (prevents organ rejection), and Methotrexate (treats a wide range of cancers and autoimmune diseases).
In a study of 404 people with rheumatic disease who had both doses of an mRNA vaccine, almost all had detectable antibodies, but those taking Rituximab or Mycophenolate had very low levels. Meanwhile, everyone taking anti-inflammation drugs called tumor necrosis factor (TNF) inhibitors to treat Crohn's disease or rheumatoid or psoriatic arthritis, had strong antibody responses. In another study of 133 people, those taking certain chemotherapy drugs, rheumatoid arthritis drugs (like Rituximab, Methotrexate), or prednisone also had lower antibody levels. Rituximab has been associated with worse outcomes in patients with rheumatic and musculoskeletal diseases and SARS-CoV-2 infection, which is why it is of further concern that these patients may not derive protection from vaccination.
These studies also focus only on antibody response, which is just one component of the immune response. Antibody levels may correlate to clinical protection to a degree, however even in healthy people, the minimum antibody levels necessary to assure protection is unknown.
Vaccines induce immunity in multiple ways. One way is stimulating B cells to make antibodies, which explains why medications that reduce B cells, such as Rituximab, Methotrexate, Mycophenolate, and steroids—result in such poor responses. But vaccines can also stimulate killer T cells, which attack infected cells, and helper T cells, which aid B cells and killer T cells.
Vaccines can also trigger the production of memory B cells, which remember how to make antibodies. If you get the virus and the memory cells are there, then you can have a better and faster antibody response the next time around. However, people whose immune systems don’t respond properly to infection could provide an ideal environment for mutations. They have a lot of ongoing viral replication in their bodies for prolonged periods of time. Virus replication in an antibody-low individual can drive the emergence of variants that are problematic, so this is a very serious issue.
In one of the previously mentioned studies, after two doses of mRNA vaccine, 30 recipients with no or low antibodies got a third shot, though not necessarily of the same vaccine they received first. The six people with low antibody levels subsequently developed higher levels, and a quarter of the others, who had never responded to the COVID-19 vaccine, developed antibody levels thought to be high enough to prevent COVID-19 after the third dose.
So I think the only response to this news, is that we, a cohort of people with probably a low antibody response to COVID-19 vaccines, is to continue to wear masks, continue social distancing and continue our impeccable hand hygiene. Also, most importantly, before we travel internationally, we must receive a third dose (preferably Pfizer) of COVID-19 vaccine.
Osteoporosis: The hidden disease...until it isn't
by Dr. Charmaine
More about the silent thief
Esther Becker was our speaker from Osteoporosis Canada July 6/7, 2021. She shared some fascinating statistics which underlined why this was an important meeting for us. She and I have put together this summary.
The mission of Osteoporosis Canada is to help individuals maintain healthy bones and prevent fragility fractures. The website is full of interesting facts, up-to-date advice, recipes and much more.
Osteoporosis is characterized by low bone mass and deterioration of bone which can lead to fractures, particularly of wrists, hips, shoulders and spine. Do not confuse Osteoporosis with Osteoarthritis which is a problem of the joints and surrounding tissue.
Eighty percent of fractures in people over 50 are osteoporotic. Fractures that happen during normal activities or from a fall from standing height are called fragility fractures and are often the first sign of osteoporosis. With proper diagnosis and treatment further fractures can be prevented.
Osteoporotic fractures are more common than heart attack, stroke and breast cancer combined: 1 in 3 women and 1 in 5 men will have an osteoporotic or fragility fracture in their lifetime.
The diagram shows the results of spinal fractures: loss of height (your doctor should measure your height annually), a rounded back (kyphosis) and a protruding stomach. This can lead to symptoms which can interfere with quality of life: difficulty breathing, digestive issues, depression, sleep difficulties, pain, and balance problems.
People with autoimmune conditions are at a very high risk for osteoporosis. They may be less active because of pain or fatigue, they are often prescribed medications such as glucocorticoids, and/or may be affected by poor absorption of nutrients (e.g., inflammatory bowel disease). For a list of medications that may lead to secondary osteoporosis see the information sheet “Secondary Osteoporosis” on www.osteoporosis.ca
Know your numbers! Just as with cardiovascular screening (where your “numbers” are your HbA1C, cholesterol, BP, CRP), we must all be proactive about our bone health. The numbers to know are our BMD (bone mineral density) and our height. The BMD test is a safe, painless test similar to an x-ray that your family physician can order.
The BMD and other factors determine your risk of fracture. The other factors include: a fragility fracture after age 40, a vertebral fracture or low bone mass, parents’ bone fracture history, high alcohol intake, smoking, and high-risk medication. If your risk of fracture is moderate or high your doctor may recommend medication.
A healthy diet that includes calcium, vitamin D, and protein as well as strength training, weight-bearing and balance exercises are important for bone health.
The “Too Fit to Fracture: Managing Osteoporosis through Exercise” booklet is available for download from the Osteoporosis Canada website.
On September 14/15 (Canada and Australia), 2021, we will welcome a Bone Fit™ qualified speaker, Jill Dunkley, to Dragon Talks. Bone Fit™ is an evidence-informed exercise training workshop, designed for healthcare professionals and exercise practitioners to provide training on the most appropriate, safe and effective methods to prescribe & progress exercise for people with osteoporosis.
by Dr. Robin Murray, Clinical Neuropsychologist, Psychologist
Most of us react strongly to “shoulds”! We should exercise, we should eat a healthy diet, we shouldn’t drink too much! But here we are in the Covid era and we do need to make sure we look after ourselves. So- helpful habits are important!
Research into habit formation tells us that it takes from 2 weeks to 6 months to form a new habit, but the average is 66 days.
Practice helps us recognise that we are developing new habits rather than performing separate isolated acts. So how do we start?
by Charlotte Hill
NUTRITION Health for your bones – slowing down osteoporosis
Whilst nutrition and having balanced hormones in your younger years create the bedrock for having strong bones later in life, nutrition and good lifestyle habits in all parts of life can play a big part in preventing the occurrence or slowing the progression of osteoporosis. Bone is actually a living tissue that continuously breaks down and builds back up creating opportunity for improvement.
I am going to explore 5 nutrition and digestion tips that support healthy bone health. I won’t dive into supplements here, as I believe that diet and lifestyle always come first and that these should be used in a bioindividual way.
If you want inspiration for how to cook more whole foods, please download this Meal Prep guide - a 21 page eBook that walks you step by step through the meal prep process for 7 days of whole food, gut friendly recipes.
Patients’ voice is critical for our health system
Parliament House, Canberra 23rd June 2021
Dragon Claw Charity’s Chair Denis Tebbutt attended the Room for the Patient View conference organized by Medicines Australia to position the patient’s view of managing their health journey right at the heart of our Federal Government. Both the Minister for Health and his opposition Shadow Minister addressed the conference after the Patient stories and an energetic and well-balanced panel session.
The Master of Ceremonies, Tracey Spicer is a professional TV commentator and journalist, herself impacted by chronic conditions within her immediate family; she passionately conducted a patient interview, introductions, and a panel discussion on the stage.
“The stories revealed that our health system continues to find the diagnosis and development of treatment plans for patients to be dispassionate and somewhat remote from the challenges that every patient finds themselves confronted with” said Denis Tebbutt.
Observations from comments made were:
“All these points are core principles upon which Dragon Claw was formed and operates for those within our cohort of auto-immune system conditions and both Ministers confirmed that the patients voice is critical for the future development of our health system” said Dragon Claw’s Chair, Denis Tebbutt.
Contact National (Australia) Help Line
Our friends at Musculoskeletal Australia provide a contact free national Help Line!
Do you have questions about dealing with pain, your musculoskeletal condition/s, treatment options, COVID-19, or accessing services? Then be sure to call their nurses on their free Help Line. They’re available weekdays between 9am-5pm on 1800 263 265.
Our tentative (always open to change!) schedule for DragonTalks
Please share with anyone with an autoimmune condition who might benefit from a safe space to share and learn.
|August 10/11||Coffee time (no agenda)|
|August 17/18||TED talk w Shawn Anchor "The happy secret to better work"|
|August 24/25||What is the Auto-Immune Paleo Diet? Should I Try it? with "our" nutritionist Charlotte Hill|
|Matheu Ricard (video) The Habits of Happiness|
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