Day 1 

March 27, 2017 

It was a struggle to get here bright an early. Earlier than even my normal working time. I made it to the MCEC at 8am. The sun was still rising, hiding behind the clouds.

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Metaphorically, Melbourne couldn't be a better city to represent Lupus.

Why?

Because the weather here changes so dramatically within less than 5 hours... As midday approached, black menacing clouds starting to cover the skies again, accompanied by gusty winds, then rain... And apparently thunderstorm later this afternoon.

Much like how I sometimes feel, really.

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Just a quick dot point summary on what I have learned from some of the lectures this AM:

  1. A lot more new genes are now identified that are found in patients with Lupus and those with auto-immune conditions, including "novel genes".
  2. The types of "novel genes" or in other words; those genes that only seem to be found expressed in people with Lupus,  varies in different groups of ethnicity (european, chinese, korean,americanindian). So, currently, there is not one breakthrough genes that pin-point as the one that could solve the Lupus cure & causal problem.
  3. Patients who are found to be dsDNA+ and those who are found to be dsDNA- have different symptoms even though they have been classified or diagnosed as having Lupus. dsDNA are markers of lupus and you normally see this in your blood test. Please ask your specialist or GP for more detailed explanation of how to interpret your dsDNA result if you are newly diagnosed with Lupus.
  4. New emerging studies in China of stem cell therapy. Especially for those patients who are not responding to any current medication treatment for lupus. This includes bone marrow or umbilical cord IV infusion of the mother of Lupus patient. This particular study in a hospital in China by Dr Sun Ling Yun shows ~90% success rate in his patients(defined by reduced disease activity, lower dose of medications including immunosuppressants and steroids etc)
  5. There seems to be some correlations between patients who experience skin rash and lesions vs those who get renal inflammation or lupus nephritis.
  6. Patients with lupus show some neurological symptoms e.g. headache, migraines, anxiety disorders, mood disorders etc even though their blood test shows that their disease are not “active” or in non-flare-up state.
  7. They found that some antibodies bind with "NMDA receptors" in brain cells, causes several reactions which causes the loss of dendritic neurons in the brain; causing neurological symptoms in patients with lupus.
  8. NMDA Receptors in brain cells are very important in memory and learning abilities.
  9. More studies are needed to ensure that medications can be developed in order to stop the antibodies to bind with the NMDA receptors in the brain.

*Please be warned that I have simplified and created a very general summary of the lectures as I intend for this information to hopefully be understood by patients who may not be familiar with a lot of medical terms. Please check the website for more details of the presenters and don't forget to register for the patient program this Wednesday 29th March from 8.30-17.30. Lupus Care Packs will be distributed around 3-3.30pm.)*

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I have unfortunately had to head home earlier this afternoon as I could not stand the fatigue anymore. I made it safely home though. It was a bit of a change, driving through different route.

More updates tomorrow.


Day 2 

March 28, 2017 

I must say today's lectures are a lot drier than yesterday...

A lot of focus on research.

Here are some quick summary:

A. There are high degree of failures in lupus clinical trials because of these challenges: 

  • outcome measures are not being "coded" or "scored" correctly during trials, this in-turn makes it very hard to quantify the results
  • because lupus patients are "heterogeneous"; meaning one lupus patient from the other has such a varying degree of symptoms, it is extremely difficult to define and recruit the appropriate "kind" of lupus patients that would then make the trials effective
  • because researchers are dealing with the immune system, and nowadays A LOT of immune receptors that are involved and play a role in Lupus patients have been identified, it is very difficult to pick which of these receptors or biomarkers should be followed up as part of the study
  • because of these challenges, a lot of lupus trials - even the ones who have resulted in very positive outcomes (e.g. new drug trials), would eventually show "no significant effect" during efficacy stage (Phase III) and many trials have to be abandoned because of these reasons.
  • To learn more on what researchers have to go through before a 'drug' can be approved and sold to public - phases of clinical trials
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B. Dr. Daniel TM Chan from Hong Kong gave a lot of very interesting summary and insight on his expertise in lupus nephritis (renal lupus) management:

  • different combination of drugs are used by rheumatologist and kidney specialist (nephrologist) for patients who has kidney inflammation.
  • He suggested that doctors should think about the short term vs. long term effects on different drug treatments on the patient's overall health before choosing the appropriate treatment.
  • He posed the questions whether a positive short term outcome outweighs the long term survival rate of patients with renal inflammation.
  • For example, in patients who have high degree of kidney involvement, high dose of steroid is used. Steroid, although very effective in reducing inflammation, increases organ damage in the long term. So, caution and close monitoring is crucial in managing lupus patients with kidney disease.
  • Some of medications used to treat Lupus Nephritis also causes "nephrotoxicity" - overtime causes scarring to the kidney tissues. So, there is very strong incentive for patients and doctors to closely monitor the progress and effect of treatments.
  • Mycophenylate Mofetil has been shown to have a more effective result in Asian Lupus Nephritis patients when compared to Azathioprine.
  • Tacrolimus is shown to be a safer drug to be used in lupus patients with nephritis who consider pregnancy. This medication does increases risk of nephrotoxicity. Baseline renal function must be checked and followed up regularly during the use of this medications.
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C. In the effort to make sure that better clinical trial designs can be created to prevent less trial failures, the doctors and researchers have now put more attention to creating more precise guidelines. To do this, they also have to do more RESEARCH!!!

For example:

  • how should do we define "REMISSION"
    • different definition so far including those from the DORIS study, DORIA study, Hopkins study. (check here for a bit of summary)
  • should "LOW DISEASE ACTIVITY" be used as a measure of "successful treatment outcome" in drug trial studies?
    • read a short transcript interview from Professor Eric Morand here.
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D. LUPUS & SKIN : no drug approved for SLE Skin lesion therapy

  • 4 main categories: acute (e.g. butterfly rash), subacute (rash that looks like psoriasis), chronic (discoid lesion on skin and scalps which often lead to scarring), intermitted (lupus tumidus lesion - lesions developed on areas exposed to sun).
  • Found an excellent summary from New Zealand Dermatology Society.
  • European Guideline 2017 to Cutaneous Lupus Erythematosus: select first website euroderm.org and downloadable PDF.
    • Plaquenil helps a lot to improve skin lesions
    • Smoking makes skin lesions worse
    • Smoking reduces the effectiveness of plaquenil
    • Topical corticosteroid use
    • Tacrolimus ointment (0.1%)

E. Infection in SLE

  • people who has SLE are more prone to infections because of the disease itself, as well as treatment used (immunosuppresant drugs).
  • viral, bacterial and fungal infections are common and could be dangerous.
    • herpes, tuberculosis, fungal infection, salmonella and e.coli - common gastro virus affecting lupus patients, varicella zoster virus (chicken pox in children/shingles in adults)
    • infections that leads to pulmonary infection have highest contribution to death in SLE patients
    • patients who are on immunosuppressant drugs are not recommended to have LIVE VACCINE (such as the varicella zoster virus).
    • Please consult your GP and specialist at the very beginning of your symptoms so appropriate treatment can be given.

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Important note: It is very important that you do not let these information scares you. Read and do your own research into a reliable scientific resources and THEN discuss with your health provider what you have learned. There are A LOT of information out there that can be misleading. My goal is to provide a summary that everyone can easily read and understand, but I have a limitation in inserting the background papers on each of these data in the summary.


Day 3 

March 29, 2017

I was not able to attend a lot of the scientific lectures on the last day because the Patient Program was running at the same time.

Here are the summaries:

A. Selecting the right outcome measure is very important in ensuring that Lupus Clinical Trials can lead to meaningful and successful conclusion.

  • using definition of "remission" as described in 2 studies: DORIA and DORIS studies.
  • rheumatologists and other specialists who are involved in managing patients with Lupus could move towards providing "target therapy"
    • target a particular value that the patient agrees as a place in which she would be comfortably leading her own life with Lupus.
    • different measurement can be used; such as using the SLEDAI, SLEDAI-2K, BILAG (explanation here), even though these are currently used exclusively in clinical trials, not so much in clinical settings.
  • using LAD - Low Activity Disease, or LLADS - Lupus Low Activity Disease State; should also be considered as one of the treatment outcome in clinical trials as well as clinical practice.
    • Dr Mandana Nikpour and the Asia Pacific Lupus Collaboration is leading the study so that a consensus definition can be reached and be useful in clinical trials and clinical practice management of lupus.
    • So far they have seen that there are more LLADS patients in "affluent countries" and this seems to correlate to better access to medications and treatments.

B. Nutrition and Lupus

  • presented by Naturopath and Homeopath Keonie Mooore from ReMed.
    • this was a very short presentation... i wish she would expand more, but the program was quite packed... she talked about a few major food products that she found to give most positive effect in her patients who has autoimmune conditions (not specifically Lupus)
      • Curcumin (active ingredient in Turmeric); has a higher toxin neutralising effect when compared to Vitamin C and Vitamin E alone, in mice studies have shown to decrease the progression and severity of arthritis, curcumin supplementation is required as a treatment target for a specific condition, different dose is required depending on individual case, just simply cooking with cumin is a good start, but usually not enough to result in "remission" or improvement in patients' medical conditions.
      • Chilli; the active compound in chilli called "Capsaicin" suppresses inflammatory markers
      • Polyphenols (found in green teas, dark chocolate etc) vs. microbiome (bacteria that grow and line our gut)
        • eating more foods rich in polyphenols increases the beneficial bacteria in our gut
        • bacteria that lines the gut has a role in modulating T cells
      • Vitamin D levels
        • very important in many patients with different medical condition; need to check regularly to determine the level.
        • in her practice she aims vitamin D level at 100nmol/L

C. Lupus + Pregnancy by Dr. Susan Walker

  • Extremely important and crucial to plan your pregnancy if you have lupus!!!
  • The use of contraception is crucial especially when your lupus is active
  • Ideally to wait until disease activity has reduced and there is no major organ involvement eg. kidney, heart, lung or brain
  • Risk factors are increased in patients with Lupus
    • small babies - risk increased by 2-3x
    • pre-eclampsia - risk increased by 15-30%
    • pre-term - risk increased by 2-3x
  • Medications safe for pregnancy:
    • Plaquenil
    • if on anti-coagulant; Warfarin is not safe, so would have to change to heparin/clexane or low dose aspirin
    • Imuran (AZA); also safe in breast feeding
    • NSAIDS such as aspirin, celebrex etc ; not recommended after 30 weeks as it has effect on baby's blood vessels, but OK during breast feeding stage
    • Steroid; should be avoided in the first trimester - could increase risk of cleft palate and increase risk of preterm ruptured membranes
    • Methotrexate, Cyclophosphomide and Mycophenylate Mofetil are NOT safe to use during pregnancy
  • Lupus patients who has positive Anti Ro and Anti La antibodies could effect babies:
    • lupus skin manifestation in the baby when born
    • affect baby's heart development leading to heart failure
  • Lupus patients who are pregnant should be followed up regularly and monitored by a team of doctors; it is recommended also to attend the tertiary centre at the later stage of pregnancy so close monitoring can be done (meaning you will be admitted to a hospital for the remaining duration of your pregnancy til you go into labour)

D. Cardiovascular risks in SLE by Dr. Ian Bruce

  • Lupus patients developed cardiovascular problems 10-15 years earlier than the general populations
  • Increased build-up of fatty and calcified deposits in the blood vessels (Atherosclerosis) which impaired the function of the blood vessels; becomes stiff and not able to pump blood as effectively to many areas of the body/organs. This problem seems to be found at a younger age in people in Lupus!
  • Hyperlipidaemia - high cholesterol levels, fat deposition around the waist (apple shaped) are also very common problems in Lupus patients
    • this propose an awareness that inflammation changes the way FAT is metabolised in lupus patients
  • Good news is, Plaquenil appears to have a protective effect in reducing cholesterol levels!!! (Yipeee! At least something good about the drugs we are taking!!!)

OKAY! By this time, I was really starting to struggle... the migraine and brain fog were setting in... so,,, just a very quick summary on the rest of the session.

E. Clinical Trials

  • Two presenters who came and presented the talk, ended their talk with an invitation for all patients to join trials!!!
  • If you are interested in joining clinical trials, please make sure you read and understand the implications of the studies properly before you are signing up for it.
  • You can find out more here.

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I will be posting about the Worldwide Lupus Community Group in the following blog post.


One of the founders of Lupus Foundation America (Duane Peters) introduced a new initiative which is the World Lupus Federation, where everyone can come to one website to find out a list of organisations around the world as well as resources dedicated for patients with Lupus. This is still in its early stage, but please check the website and also, sign the petition to WHO to make sure that LUPUS is included as one of the autoimmune conditions in their initiative!!!!

Other Lupus Resources and Groups: 

  • Autoimmune Resource and Research Centre; in my opinion one of the best in Australia, even though they are based in Newcastle!!!
    • they run activities and educational sessions for patients with autoimmune diseases
  • Move Australia - formerly Arthritis Australia
    • they are trying hard to make their organisation better... by changing their name and including other conditions not just Arthritis, that affect joint, muscles and bone problems... so they are trying to include Lupus as well... so, watch the space, was their message. (Frankly, by this time, my migraine was unbearable and I had to resort to Neurofen to survive the day...)
  • Syamsi Dhuha FOUNDATION; is Lupus Foundation established in Indonesia in 2003.
    • They have actually launched a Lupus Exercise program, which their members have been doing and have reported positive feedback. The exercise is quite gentle, so you can still do it even when you have some degree of pain and discomfort. It is designed to alleviate the stiffness and relief the joint and muscle pain :). Please check their video :)
    • They also developed a Lupie Diary App; which you can download for free.
      • to Download for Android user
      • to Download for Iphone user
      • I have yet to try it, but I am interested, so will let you know in future updates :)
  • Australian Lupus Registry; something closer to home, this is part of the Monash Health School of Clinical Sciences. They would like to launch a "Lupus Portal", which is basically, almost like the Lupie Diary App, but you would log in and then record your symptoms daily.
    • The idea is so that apart from personal collection, the researchers can also use the data for research; for example, finding the relationship between weather changes and the severity of fibromyalgia (which a lot of Lupus sufferers have on top of everything else we have)
    • Such information is not available at the moment because there is a lack of data, so this is one way that we can all participate for the greater good of finding better treatment for the myriad of conditions, pain and suffering we encounter!!!
    • If you think this idea worth a try or you are interested to know more, please express your interest by:
      • emailing: med-lupusregistry@monash.edu
      • subject: LUPUS PORTAL

International Lupus Foundation and Lupus Bloggers:

There are so many WARRIORS out there who are doing such magical works that we need to support. Please check their website when you get a chance, albeit for a little inspiration of how different it is to live with Lupus in other country.... and how lucky we are still, to have access to a lot of treatment for Lupus in Australia.

  • Sometimes it is Lupus - Iris Carden is a Lupie and blogger from Queensland!!!
  • Oyemam Autoimmune Foundation; based in Ghana.
  • Lupus Foundation of Philipines; based in Philiphines (could not find their website, but I have the President's email address if you are interested in contacting her, let me know :) )
  • Lupus Alert; based in Mauritius.

Worldwide Lupus Community