1

President’s report & raffle winners Page 3

Regional reports Page 4/5

From the Editor Page 5

Exercise for the treatment of Lu-pus By Andrew Williams and Adam Knapek

Page 6/9

Common Tests in autoimmunity: ANA by Adrian Lee

Page 10

Resumé of Narelle William’s arti-cle. Wise words

Page 11

For Your Diary Page 12

LUPUS NEWS

TASMANIA Published Quarterly by

Lupus Association of Tasmania Inc.

Registered Charity No. ABN 96 163 951 956

Volume 34 No 4.

December 2014

Committed to understanding and supporting people with Lupus, Sjögren’s, Schleroderma

& Fibromyalgia or any autoimmune disease

In This Issue

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Office Bearers Lupus Association of Tasmania inc. Registered Charity ABN 96 163 951 956 All Correspondence to: PO Box 639 Launceston, 7250 Tasmania, Australia Ph (03) 64316042 Email: lupustas@lupustasmania.org.au Website: lupustasmania.org.au Patron: Hon. Michael Ferguson MHR President: Vic Hartas Vice-President John Dent Secretary/Public Officer: Bruce McCormack Treasurer: Beverly Wallace Committee:Cheryl Dent, Claire Redfern, Queenie Ennis & Moira Keefe Librarian: Joan Keefe ph. 63449322 Northern Co-Ordinator: Colleen McCormack ‘Phone 03 6343 3078 Email: clantoss@bigpond.com North-West Co-0rdinator: Denise Hartas ‘Phone 03 6431 6042 Email: hdenise@bigpond.net.au Southern Co-Ordinator: Heather Cowled ‘Phone 03 6272 3096 Email: lhcowled@bigpond.net.au Editor: Edna Brock Ph. 03 6328 1166 Email: sbr87203@bigpond.net.au

Subscriptions: $15 Badges $ 5

Embroidered or X-Stitch Butterfly Brooches $10 Embroidered Butterfly Key Rings $5 Donations over $2 are tax deductible.

Proudly Supported by Launceston Pathol-ogy

We would like to acknowledge the Hon Mr. Mi-chael Ferguson MHR for the printing of our Newsletter and his continued support.

The Lupus Association of Tasmania, Inc.

Does not recommend or endorse any drugs,

treatments or procedures reported in this

newsletter. The information is intended to

keep you informed and we recommend that

you discuss any information mentioned

with your Doctor

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President’s Report

Another year gone with Christmas just around the corner so I suspect that gift shopping is on everyone's agenda, good luck with that. School holidays starting soon, house full of kids and grandkids, good luck with that as well. It has been a mixed year with some good times and bad. Sadly a few of our long time members are not doing too well, but they are strong stuff and will no doubt bounce back. Our Lupus Awareness Week saw some excellent speakers, especially some facts on kidneys, and tips on exercise. Lucianna Torrents gave an excellent presenta-tion on Lupus and medication at the close of Lupus Awareness Week at the Bridge Hotel, Forth, members have requested that she return for further talks. Thanks also to Bruce, our secretary, who gave an on air interview on the morning of the launch. Unfortunately the media were not present for the launch regardless of the many high profile people that attended. The Advocate printed a great interview with member Narelle Williams that covered 2 pages of the Scope supplement. Libby Bingham did a great job in not cutting any facts and the whole interview was printed as told by Narelle. Some of the in-terview will be printed in our newsletter. Congratulations to our raffle winners and a huge “thank you” to all those who do-nated prizes for the raffle. The more money we save the better, as more funds we get will lead to more funds we have for research. Membership fees are now due so please renew your membership as we do need you. Have a very merry Christmas and a Happy New Year and I do hope 2015 is a bet-ter year for you all. Vic Hartas President

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Raffle Winners 1st F. Vireux 2nd Maria Roberts 3rd Trudie Lusted 4th Donna Taylor 5th A Wescombe 6th Bev Boon 7th Judy Morris

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From the Treasurer Another busy year for the Lupus Association and I would like to wish all our mem-bers and especially our hard working committee a very Happy Christmas and a safe New Year. Also a big thank you to everyone who supported our raffle and gave donations, as this is our only fundraiser for the year it was a great success. Please note for next year, if you are unable to sell tickets, please let us know and we won’t send you out any tickets, also if your address or phone number has changed, please advise the secretary. Thank you. Treasurer Bev Wallace

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Regional Reports

Southern Region Best wishes for a safe, happy and healthy Christmas and New Year Season for all readers from your fellow members in the South of the State. We have continued our even numbered monthly meetings throughout the Winter but our numbers have been fairly low, usually due to weather and sickness. We are hoping that the warmer summer weather will enable eve-ryone to gather for our Christmas Luncheon on Wednesday 10th Decem-ber. We meet as usual at Esus Café in Elizabeth Street at 12 midday. We do not do a Secret Santa as we think the presence of each member is pre-sent enough. Our first luncheon for 2015 will be on the second Wednesday in February. I take this opportunity to thank all southern members for their help and support during 2014 Christmas Greetings From Heather Cowled Southern C0-0rdinator

******************************** Northern Report

Lupus Awareness week ( LAW) has passed and I hope your area has spread the message of autoimmune diseases. We were surprised when selling raffle tickets at the local shopping centre the number of people who knew of the disease because of a history of it through their families. We must still try to make it known so that people are aware that there are 100 or more conditions that fall under the um-brella of autoimmune diseases, this of course includes Lupus. The launch of LAW was very successful with two very enlightening speakers and much talk over afternoon tea. The Forth closing again was enjoyed by those present with lots of good questions asked. Well done to all three speakers, giving up their precious time; we are now working towards next year’s LAW and launch and any new ideas would be much appreciated. Christmas is coming fast and again we are having our celebration at Edna and Seton Brock’s home. Come and see the beautiful garden and meet and make some new friends, we can often help each other cope and have a better life style. You only need to bring your special salad everything else is provided, we would love to meet members who we do not yet know. Best wishes for the festive season and a happy New Year to all. Colleen McCormack Northern Co-ordinator

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North West Report

Our Lupus Awareness Week lunch at Forth was well attended but there were a lot of apologies, I hope those who couldn’t make it through illness are a lot better. Lucianna Torrents gave a splendid talk on medication and lupus with the main theme on skin care. The feedback from members was great and they wish that she returns again for more information. Thanks to all the members who travelled over from Launceston for the close of our awareness week. Vic and I attended the Penguin Senior Citizens Club 49th birthday, they are a good supporter of our association. The entertainment was great as was the goodies members prepared for afternoon tea, calories everywhere and I’m sure Vic though he was the chief food taster. Our last couple of outings have been well attended with the usual mem-bers in attendance. Our next lunch is at the Top of the Town Hotel Motel, Upper Burnie for a 12 noon lunch. Please come along as we will draw up next year’s venues and dates. We would like to find out from you members if you would like a BBQ thrown in from time to time on a weekend so as families can attend. Hope you all have a merry Christmas and a pain free new year.

Denise Hartas Co-ordinator

From the Editor

Another year has flown past, and here we are at Christmas time once again. I’m sure that each year flies past faster, but perhaps that feeling is just “age”. I hope that all members have had a healthy year in 2015 and looking for-ward to the Summer weather. We had a very good turnout at our Launch of Lupus Awareness Week and had some very entertaining and informative speakers. Lisa Banfield gave us a few tips for exercises and you will read another article on exercise from Andrew Williams and Adam Knapek in this issue both of which has clarified that the exercises I have been given in my fortnightly visits are really necessary. Dr Rajesh Raj, a Nephrologist, gave a very informative talk on the role of kidney problems in Lupus patients. Which also explained some of what has been written in previous issues re Lupus Erythematosus Syndrome As ever we are grateful for the support that you have given over the last 12 months and I would like to wish you all a Happy, Healthy Christmas and a prosperous New Year for 2015. Try not to over indulge!!! A big thankyou to Andrew Williams for allowing us to publish his article on Exercise and Adrian Lee for his article on ANA tests also thank you to Narelle Williams for granting permission to print some of her interview with the Advocate Newspaper “Scape”. Edna Brock, Editor

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Exercise for the Treatment of Lupus By Andrew Williams and Adam Knapek

Introduction Systemic Lupus Erythematosus (SLE) is an autoimmune disease which can affect almost every organ system within the body. SLE develops when there is a malfunction in the production of antibodies, which lack the abil-ity to recognise ‘self’. As a result the antibodies begin to attack healthy cells within the body, resulting in inflammation, tissue damage and loss of function (Miah, Hague et al. 2008). SLE affects 1 in 700 people, with a higher prevalence of the condition among women than men (Jimenez, Cervera et al. 2003). Common symptoms include musculoskeletal issues, heart disease, pulmo-nary disease and depression (Strombeck and Jacobsson 2007). One of the most prominent and debilitating symptoms reported by patients with SLE is severe fatigue (Madhok and Wu 2009). These symptoms can reduce the physical capabilities of the individual, including functional capacity (Hochberg and Sutton 1988), aerobic capacity (Tench, Bentley et al. 2002) and quality of life (Fortin, Abrahamowicz et al. 1998). A vicious cycle can arise as these symptoms often cause individuals to stop exercising and can lead to them avoiding activity altogether (Ayan and Martin 2007). This sedentary state results in further de-conditioning of the individual, result-ing in greater disability and fatigue and increasing the risk of the develop-ment or progression of associated cardiovascular and metabolic condi-tions. Patients with SLE exercise less frequently and have lower exercise capacity compared to healthy counterparts (Eriksson, Svenungsson et al. 2012) and individuals’ with more severe forms of SLE exercise even less than those with less severe SLE. Individuals with SLE typically experience ‘flares’ when symptoms are exac-erbated as well as stages of remission (Gurevitz, Snyder et al. 2013). There is currently no cure for SLE however there are treatment options available. The treatment of SLE is individualised for each patient as it de-pends on the clinical manifestations present, organ systems involved and severity of the condition (Gurevitz, Snyder et al. 2013). Trestment is cur-rently dominated by pharmacological options, primarily to reduce inflam-mation as well as treat specific symptoms such as depression and pain. Implications/Progression of Disease Currently pharmacological therapy is the main treatment modality for the treatment of autoimmune diseases with medications targeting inflamma-tion and symptoms such as pain. There is no doubt that these medica-tions can lead to reductions in inflammation and chronic pain thereby re-ducing a number of health and clinical impairments that occur as a result of chronic inflammation. However these powerful medications often have side effects which can contribute to wasting of muscle and bone, and changes in the structure of muscles leading to them becoming more fati-gable, and increasing the risks of suffering accidental falls and bone frac-tures. Other effects of these medications can also make the patient more susceptive to external pathogens, cause metabolic disease, fatty liver dis-ease or type 2 diabetes, and contribute to progression towards cardiovas-cular disease (Perandini, de Sa-pinto et al. 2012).

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Role of Exercise Regular exercise in its many forms can directly lead to reductions in in-flammation in chronic diseases that are characterised by a low-grade sys-temic inflammation, for example type 2 diabetes or chronic heart failure. Given that SLE is characterised by chronic inflammation, it seems reason-able to suggest that exercise may directly combat inflammation at the heart of the disease process. In addition to this proposed mechanism how-ever, exercise has been shown to result in improvements in immune func-tion, to manage and even reverse metabolic conditions such as type II dia-betes and to assist in maintaining and building bone density and muscle mass thereby improving functional capacity and reducing the risk of falls and fractures particularly in older individuals. Consequently there is a strong argument that exercise should be considered as a complementary therapy in the treatment of SLE and other autoimmune diseases. To date however there have been few studies that have investigated the benefits of exercise training in patients with SLE. The studies that have been con-ducted have not always reported similar results which may be due to differ-ences in the length of exercise training programs trialled and the types and intensities of the training stimulus that has been used. What can be stated with certainty however, is that exercise training can lead to a num-ber of benefits without leading to any worsening of the disease or in-creases in inflammation (Perandini, de Sa-Pinto et al. 2012) and that exer-cise can delay or reverse many of the side effects associated with the com-mon pharmacological treatments through its positive effects on bone de-velopment, and its ability to reduce cholesterol levels in the blood and pre-vent the progression towards type II diabetes (Figure 1)

DRUG THERAPY POSSIBLE ADVERSE EFFECTS

AUTOIMMUNE RHEUMATIC DISEASE

EXERCISE THERAPY

CORTICOIDS

IMMUNOSUPRESSANTS

BIOLOGICS

IMMUNOSUPRESSION

METABOLIC DISTURBANCE

LOW BONE AND LEAN MASS

LOW MUSCLE FUNCTION POOR CLINICAL OUTCOMES

INFLAMMATION

LOW AEROBIC FITNESS LOW MUSCLE MASS

(1)

(2)

AEROBIC TRAINING

STRENGTH TRAINING

COMBINED AEROBIC AND

STRENGTH TRAINING

Figure 1. The role of exercise in the treatment of autoimmune diseases and reduction in side effects of common medications. From (Perandini, de Sa-Pinto et al. 2012)

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Exercise for the Treatment of Lupus: Cont. Recommendations In most chronic conditions and exercise program containing endurance, resistance and flexibility exercises will provide the best outcomes. Although the benefits of ex-ercise have not been as well established in SLE as for other chronic conditions, it is recommended that exercise should contain a combination of aerobic, resistance and flexibility exercises due to the combined benefit that these different exercise modali-ties provide in other conditions. Aerobic is important as it increases exercise tolerance and improves the health of the blood vessels (dos Reis-Neto, da Silva et al. 2013) thereby reducing the risk of cardio-vascular complications, and improving the ability to perform normal activities of daily living as well as reducing depression, anxiety, pain and fatigue in SLE patients (Perandini, de Sa-Pinto et al. 2012). Resistance exercise has been shown to increase muscle strength which assists in taking pressure off sore joints affected by the dis-ease and also assists in maintenance of balance and consequently reduced falls risk (Perandini, de SA-Pinto et al. 2012). Another benefit of resistance training is the maintenance of bone mass reducing the risk of fractures. Where possible flexibility exercise (stretching) should be combined with the other forms of training you main-tain flexibility and assist in ongoing maintenance of function. General recommenda-tions for each type of exercise for patients with SLE are included in Table 1. Table 1. Exercise Recommendations for Non-Complex patients with SLE

Length and intensity of training are also important with studies that have exercised participants at higher intensities or had longer intervention periods (≥ 12 weeks) gen-erally reporting better outcomes than those that have had shorter invention periods or lower intensity often unsupervised exercise or physical activity. This is important

Aerobic (Endurance) Resistance (Strength) Flexibilility (Stretching)

Mode Frequency Intensity Duration

Large Muscle groups 3-4 days per week 60-80% max Heart Rate (A level at which there is a noticeable increase in rate and depth of breathing but at which you can still maintain conversation) 20-60 minutes per ses-sion

All major muscle groups (6-10 exercises) 2-3 days per week 3-4 sets of 8-12 Repetitions 20-60 minutes per ses-sion

Major muscle groups 5-7 days per week ~10 minutes per session

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Exercise for the Treatment of Lupus: Cont. they start noticing improvements in their condition. This must be kept in mind as it can be easy during the early weeks to give up as the exercise does not appear to be providing the expected benefits. While exercise of the types and intensity included in table 1 is encouraged it needs to be prescribed and commenced with care due to the many contraindica-tions for specific types of exercise that may exist in patients with SLE due to coex-isting medical conditions. The effects of any additional conditions on overall health and subsequent risks should be considered when prescribing exercise for these patients and if in any doubt how to commence exercise, individuals should seek advice from an appropriate health professional. For many individuals with SLE this may involve discussing their wish to become more active with their GP. The GP may be able to provide suitable advice or may choose to refer to an Exer-cise Physiologist for prescription and supervision of an appropriate exercise pro-gram. If sufferer qualifies for a chronic disease management plan, this may allow any allocated visits to an Exercise Physiologist to be at least partially covered by Medicare. In summary, exercise is likely to provide multiple benefits to the SLE sufferer, re-ducing the disease burden, and improving physical function and quality of life. However to really be of benefit it must be performed regularly and at an appropri-ate intensity. Those seeking help with getting started should consult an appropri-ate health professional. References Ayan, C. and V. Martin (2007). “Systemic lupus erythematosus and exercise.” Lupus 16 (1): 5-9. Dos Reis-Neto, E. T.,A. E. da Silva, et al. (2013). “Supervised physical exer cise I improves endothelial function in patients with systemic lupus ery themato-sus and matched controls.” Rheumatology (Oxford) 52 (12): 2187-2195. Eriksson, K., E. Svenungsson, et al. (2012). “Physical activity in patients with sys temic lupus erythematosus and matched controls.” Scand J Rheumatol 41 ( (4):290-297. Fortin, P.R., M.Abrahamowicz, et al. (1998). “Impact of disease activity and cumulative damage on the health of lupus patients”. Lupus 7( 2): 101-107. Gurevitz, S. L., J. A. Snyder, et al. (2013). “Systemic lupus erythmatosus: a review of the disease and treatment options.” Consult Pharm 28(2): 110– 121. Hochberg, M.C. and J.D. Sutton (1998). “Physical disability and psychosocial dys function in systemic lupus erythematosus. “ J Rheumatol 15(6): 959-964. Jimenez, S., R. Cervera, et al. (2003). “The epidemiology of systemic lupus erythe matosus.” Clin Rev Allergy Immunol 25(1): 3-12. Madhok, R. and O. Wu (2009). “Systemic lupus erythematosus.” Clin Evid (online) 2009. Miah, T., M.A. Haque, et al. (2008). “Clinical profile, management and outcome of l lupus.” Mymensingh Med 17(2 suppl): S6-11. Perandini, L.A., A.L. de Sa-pinto, et al. (2012). “Exercise as a therapeutic tool to counteract inflammation and clinical symptoms in autoimmune rheumatic dis eases.” Autoimmune Rev. Strombeck, B. and L.T.Jacobsson (2007). “The role of exercise in the rehabilitation of patients with systemic lupus erythematosus and primary Sjogren’s syndrome.” Curr Opin Rheumatol 19(2): 197-203. Tench, C., D. Bentley, et al. (2002). “Aerobic fitness, fatigue, and physical disability in systemic lupus erythematosus.” J Rheumatol 29(3): 474-481.

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Common tests in autoimmunity: The antinuclear antibody (ANA) test

By Adrian Lee

Introduction One of the most commonly ordered tests when a doctor suspects an ongoing auto-immune process is the antinuclear antibody (ANA) test. This is a test on the serum of blood (the non-cellular component without clotting factors) that takes a couple of days to perform. The ANA test examines for the presence of ‘self’ antibodies (immune system pro-teins which bind other proteins to initiate an immune response) against nuclear components of human cells. Because there are many proteins in the nucleus, the ANA test is actually looking at a hetrerogeneous group of antibodies. The Result There are two components of the ANA test that are typically reported: (1) the de-gree of positivity; and (2) the staining pattern of the test. When an ANA test is re-ported as positive, the degree of positivity will be reported as a titre – this is a di-lution of patient serum that will give a positive result. The higher the concentra-tion and reactivity of antibodies, the more dilute a patient serum can be to be posi-tive. Because the antibodies have different targets, they can stain in different pat-terns when examined under a microscope. Distinct patterns have been identified which are associated with certain diseases. What does a positive mean? The simple answer is: not a lot. Positive results need to be interpreted by a quali-fied professional in clinical context (after careful history-taking and examination) and often additional investigations. Unless the result suggests an ‘extremely posi-tive’ ANA, the suggestion that there is an autoimmune process is not very well supported. A few other medical conditions can also give a positive result even in the absence of autoimmunity; this is why careful interpretation is needed. Conclusion ANA is a general test that is ordered when immunity is suspected. A large number of autoimmune diseases are positive for ANA; but the bottom line is that it can also be negative in these diseases and ultimately, the result needs to be consid-ered in clinical context. Further reading: Lee AYS, Ang EBH. A clinical overview of antibodies in general practice rheumatol-ogy. Br J Gen Pract. 2014; 64(626): 485-6. Disclaimer: This article is provided for general education and information only and should not be a substitute for a qualified healthcare professional’s interpretation and/or ad-vice on pathology tests; medical treatment; or medical care. Consult your doctor or healthcare professional if you have any concerns. The Author: Adrian Lee, B.Med.Sc(hons.) November 2014 Adrian is a medical student at the University of Tasmania with strong clinical re-search interests in autoimmunity. Thank you Adrian for this article it explains what ANA test entails. I have often wondered what the test meant and you have explained it clearly for me . Ed.

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Narelle Speaks Out About Life with Lupus

Narelle is a single mother of two boys. She has a chronic autoimmune dis-ease which affects every aspect of her life. She credits a strong Christian faith with helping her to make the adjustments she has had to make. When she was diagnosed she reached a low spot. Trying to cope with con-stant pain and worrying about her twin boys. Lupus means that her pulmonary function had been impaired. She has lost 40% of lung capacity and has severe vertigo. Putting washing on the line is a problem which she needs to contend with. “It’s like breathing through a straw so I can’t walk very far”, she said. She finds walking difficult as she can’t watch where she is going because of vertigo. She has to rely on living with her parents as a fall caused her problems in getting up again and she finds herself worrying about her two boys. She has a lot of pain relief medication and finds work difficult as she hasn’t the breathing power to take on a lot. Narelle is always cheerful and although she can’t do a lot of what she used to do. she says can play board games with her boys, as well as watch movies with them. “We can still have fun,” she said. Her parents give her support and friends from her church have been a great help in driving her to appointments as well as supplying meals, but her one wish for the future is to be cured. Thank you Narelle for allowing us to print a resumé of your interview in the Advocate Scape October 11 2014

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Some wise words

Two friends were walking through a desert area. As they walked they con-versed about various topics. It was over a point of discussion that didn't really matter very much that an argument started and grew rather heated. One slapped the other on the face. He was deeply hurt, but without saying anything he wrote in the sand: “Today my best friend slapped me in the face.” They kept walking for a long time until they came to an oasis, where they stopped to cool themselves in the water. The one who had been slapped went too far from the edge of the pool and became stuck in the mud. He struggled to get free and began sinking. He would have drowned had not his friend saved him. After he recovered from the near drowning he wrote on a stone: “Today my best friend saved my life.” The one who had first slapped and wrote in the sand asked, “After I hurt you, you wrote in the sand, but now you write on a stone; why?” The friend replied, “When someone hurts us we should write it down in the sand where the winds of forgiveness can erase it. But when someone does something good for us, we must engrave it in stone where no wind can erase it.” Images of Life Celebrations Jim Fletcher and Roger Howerton 2006

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For Your Diary

Southern members Christmas Luncheon Wednesday

December 10th 2014 Esus Café,

Elizabeth St., Hobart 12 Midday

Ring heather on 62723096 for booking.

Christmas Luncheon Sunday 7th December

11.00 am At Edna and Seton Brock’s

154 Windermere Road Windermere

(on the East Tamar) Please bring a salad All else is provided.

Come and enjoy the company, garden and festivities