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Newsletter August, 2021

 What's in this Newsletter

  • COVID update by Nurse Jill
  • Osteoporosis: The hidden disease...until it isn't by Dr. Charmaine
  • New Habits by Dr. Robin Murray
  • Functional Nutrition by Charlotte Hill
  • Patient's voice is critical by Denis Tebbutt
  • Contact National (Australia) Help Line
  • Dragon Talks Events Calendar

 COVID update

by Nurse Jill

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Current Immune Response to Vaccination

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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

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 More about the silent thief

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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.

www.osteoporosis.ca

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.

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 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.

Once you have your BMD results, you can calculate your risk using either the FRAX calculator or the CAROC calculator

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.

New Habits

by Dr. Robin Murray, Clinical Neuropsychologist, Psychologist

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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?

  • Developing the mindset is important: think of long-lasting behavioural change that will move you toward your goal and remind yourself that you are changing your life style so that you have a better life.
  • Think about big goals but daily small habits. Visualise the process, rather than the big goal.  We just need to get started; for example, exercise for 5 minutes or meditate for 1 minute.  Then as we become comfortable with achieving small goals, we add just a little at a time.
  • It helps too, to create chains: “Before I have my morning coffee, I’ll do my stretches!” “Before I go to bed at night, I’ll put out my walking outfit.”
  • Progress comes with consistency-part of reaching our goals is working toward them even when we don’t want to.
  • Let’s eliminate what the heck moments- we don’t give up because we have had a bad week or didn’t do our daily quota or because we needed pain-killers.
  • Be boring- reduce variability- Barack Obama wears only blue and grey so he doesn’t have to make too many decisions.
  • Don’t be hard on yourself-forgive yourself when you haven’t practiced and move on.
  • Reward yourself for your successes! 

Note: Feel free to attend our weekly Dragon Talks (see below Calendar of events) and meet Dr. Robin or write to This email address is being protected from spambots. You need JavaScript enabled to view it. and mark attention Dr. Robin.

Functional Nutrition

by Charlotte Hill

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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.

  1. Eat whole foods - your diet plays a critical role in your bone health because it determines if you’re obtaining enough protein and essential vitamins and minerals.
    • Plenty of foods high in minerals - must be obtained from the foods that we eat and are critical for bone health, for example: calcium, magnesium, manganese. Great sources include: leafy green vegetables (e.g. kale, spinach, Swiss chard, watercress, collard greens, mustard greens, dandelion greens), sea vegetables (e.g. nori, wakame), organic and grass fed dairy, other green vegetables (broccoli and okra), almonds and sardines (the highest source of calcium if you eat the bones).
    • Moderate amounts of high quality protein - half of your bones’ structure is made of protein and therefore essential to include as part of your diet. Quality sources include grass-fed meat, wild-caught fish, pastured eggs and poultry, fermented cheese and yogurt, nuts, seeds, beans and legumes.  Homemade broth also provides all of the necessary vitamins and minerals for building bone, as well as the proteins collagen and glucosamine for healthy joints and cartilage whilst also supporting the health of your gut - see here for a homemade recipe.
    • Anti-inflammatory fats - osteoporosis can be related to chronic inflammation which anti-inflammatory acts can help to counter. Fats are also crucial for binding to calcium, and transporting them into cells for storage in tissues. Great sources: wild salmon, sardines, anchovies, mackerel, halibut, avocado and extra virgin olive oil.
  2. Pay attention to your digestive health: essential to ensure absorption of the nutrition eaten, for a healthy microbiome that can influence bone remodelling and to ensure inflammation is not been driven by gut dysfunction.
    • Having adequate stomach acid levels is a key component of healthy digestion and for absorption of protein and minerals but unfortunately having low stomach acid is really common. This can be indicated by: heartburn, need to take PPIs, bloating, gas, constipation and diarrhoea or excessive fullness after meal. If you have symptoms, I would recommend working with a functional practitioner to support you and improve your digestion.
    • Simple steps you can take to improve this:
      • Relax whilst you eat your food and make sure you chew your foods
      • Eat a high quality diet and reduce processed foods
      • Experiment with 2 tbs of lemon juice or apple cider vinegar in 125ml water before meals
      • Limit water during meals to increase the concentration of digestive juices
  3. Reduce consumption of sugar, soft drinks, alcohol and caffeine  - a primary function of the bones is actually to buffer the pH of the blood, so part of a healthy bones regime is minimising the requirement for bones to neutralise acidity of the blood. Therefore, reducing the list here is vital, as these can all lead to bone loss as well as nutrient depletion and also inflammation.
  4. Drink plenty of filtered water - good hydration is vital to carry minerals around the body and help them be absorbed . If you feel you are drinking lots of water and urinating straight away, try a pinch of good quality salt (celtic sea salt, rock salt) or a squeeze of lemon, into your water to increase the mineral content.
  5. Work to improve hormonal balance - by addressing the above you have already made great headway. However, if you are still experiencing symptoms of hormone imbalance please work with a functional practitioner to further look into this as it is another vital element for bone health for both men and women. 

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.

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Patients’ voice is critical for our health system 

Parliament House, Canberra 23rd June 2021

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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:

  • This is when you realise that the health system is not integrated and prepared to embrace you with a treatment plan
  • Getting the right health service to verify a diagnosis is difficult as doctors seem reluctant to order expensive interventions such as MRI’s
  • Our health system is not a national model with ‘Pathways’ to follow
  • Where and who are positioned to give you the best advice on how to manage your diagnosis and navigate the health system
  • For the best healthcare it is an expensive model to engage with, or just wait six months and hope you don’t die in the process.
  • There is no ‘Holistic’ model of care or integration with the other professionals that can help
  • Getting access to drug trials and medicines that are known to work is very difficult and expensive, often prohibitive to many. 
  • Our current system is not ‘Fit for Purpose’ and needs improving to meet the needs of ‘Today’, comments from Professor Andrew Spencer and Dr Mike Freelander, who joined as panelists with the patients.
  • Expand models of care to incorporate ‘Nurse Practitioners’ who have specialist knowledge about chronic conditions and the emotional needs of patients
  • Patient collaboration is critical when you are diagnosed with a chronic condition and need knowledge along with the experience of those who have gone before, they can ease the anxiety and advise pathways of care that make sense
  • It still takes Australia four times longer to get a medicine on the PBS that it does in the US and the UK

“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

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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.  

Alternatively feel free to drop a line to our patient volunteers with your phone number and we are happy to give you a call by appointment This email address is being protected from spambots. You need JavaScript enabled to view it..

Here is MsK’s newsletter MSK News

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Our tentative (always open to change!) schedule for DragonTalks

August 2021

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

August 31/

September 1

Matheu Ricard (video) The Habits of Happiness
 

 Please contact Charmaine This email address is being protected from spambots. You need JavaScript enabled to view it. for the zoom link or if you see a session of particular interest, and would like a link to a taped session.

Tuesdays North America 8 pm ET
Wednesdays Australia 10 am AET

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