A Big than you to Helen for the Overview
Professor David Jayne started off the talks with a very interesting summary of the progress in lupus treatments – are outcomes improving? He outlined current global lupus nephritis trials; which seem to be showing a general better treatment success rate in the EU in recent decades. In the US, success rates still seem to vary depending on which State you are treated in. Prof. Jayne went on to discuss the need for continued improvement of NHS services and the links between patients, medical staff, research, pharma industry and the health care system. A key part of this process has been developed at Addenbrookes Hospital (led by Dr Frances Hall). The ENRAD scheme (Eastern Network for Rare Autoimmune Diseases) provides dial-in conferences for medical practitioners to be able to discuss cases centrally (with relevant specialists); whilst still treating patients locally. This will undoubtably save time, money and limited resources; but will more importantly (to patients!) speed up diagnosis and treatment times.
Prof. Jayne confirmed the Clinical Commissioning Policy Proposition; that Rituximab has now been approved across the board to SLE sufferer’s, provided each individual case meets the qualifying disease activity criteria.
He went on to confirm that there is still no dedicated medical speciality for lupus treatment. Lupus patients are often seen by a range of specialists under rheumatology, neurology, nephrology, ophthalmology to name but a few. He jested that in an ideal world there would be consultant ‘Lupologist’!
Prof. Jayne summarised research ‘Master Plans’, setting a new benchmark to drive up standards; and also, the success and failure of recent and ongoing drug trials. Bellimumab was the only successful drug from a number of trials which involved over 20,000 SLE patients. Alpha Interferon signature in SLE is also being investigated further by big pharma companies; as it is now thought that SLE sufferers tend to produce far too much interferon. AstraZeneca is currently developing late stage trials of a drug to reduce interferon production.
He finished by stressing the importance of patient-lead self-help. The key is understanding what’s wrong; understanding your prescribed treatments; and sticking to treatments. The more informed and educated a patient is; the better their individual outcome, as this is a long-term disease which requires stable management. The Lupus Nurse also plays a key role in this aspect, both in initial information and ongoing support and monitoring of disease activity and treatment implementation. Ultimately, rehabilitation is the key, which is as much down to the patient as it is the responsibility of medical staff! Key elements include consistent pain management, sticking to prescribed medication regime, weight loss, Cognitive Behavioural Therapy (CBT). Prof. Jayne briefly summarised frequently encountered problems in a Q&A session at the end of his presentation; such as slow diagnosis (often due to lack of flare at time of initial consultation after long wait from GP referral); no distinct single diagnostic test (results often on ‘lupus spectrum’). He concluded by answering a question on Hydroxychloroquine and its long-term efficacy and safety. He stated that 60-70% of SLE patients tolerate Hydroxychloroquine. It is a very safe drug with long-term benefits of preventing other SLE related conditions. This is why patients are often recommended to remain on this drug at a low dose, even if they are feeling better, or that it is not having any beneficial effects to them.
Dr Mary-Ellen Lynall gave a very well received presentation on ‘Living with a Lupus Diagnosis’. She is a Fellow of the Dept. of Psychiatry at the University of Cambridge; and currently works in Professor Jayne’s clinic. Dr Lynall started by discussing what makes lupus difficult to live with? In summary, it is the actual diagnosis; no cure; both the visible and invisible symptoms; unpredictable nature of disease activity; and brain involvement.
She outlined some frequently encountered patient experiences from her clinic duties, which largely resulted from items in the above list. Recent research has shown that both starting and stopping steroids can make brain symptoms more likely. How? – by a loop between lupus, brain symptoms and stress. Lupus can lead to brain symptoms – lupus can trigger stress, and also be triggered by stress – stress can lead to brain symptoms. Research has also shown that stress can trigger changes in the immune system. In animals, there has been a proven increase in autoantibody cell production when under stress.
Dr Lynall went on in more depth to inform on the importance of mental wellbeing when living with a long-term chronic disease, such as SLE. Specific advice included: social connections; sleep; staying active (50% more likely to get depressed if do NO exercise – recommended 15mins per day to avoid depression directly caused by inactivity); eating well (varied and well balanced nutritional diet); learning new things; mindfulness; random acts of kindness; being kind to yourself!
Many patients discussed issues they have with lupus and their identity – ‘me and lupus’, flipping between being healthy and disabled. Other key difficulty is acceptance and not letting the disease define you.
She outlined the various means of help available, which included GP’s, lupus hospital team, psychological wellbeing service (available by referral or self-help), medications, talking therapies, and 111 service if in crisis.
The future? It is hoped that a better understanding of brain involvement in lupus will help patients directly through new drug availability and better symptom management, and by removal of the stigma of suffering from psychological conditions.
Dr Natasha Jordan presented a talk on the wide-ranging topic of ‘lupus and overlapping medical conditions’ – no mean feat in a 20min time slot!
She broke the presentation down into 3 key themes; Autoimmune diseases; Raynaud’s Phenomenon; and Fibromyalgia.
Autoimmune Diseases – it is now well documented that if you have one AD, you are more likely to get another autoimmune disorder of some sort. SLE patients commonly also suffer from either Sjogren’s Syndrome, Anti-phospholipid Syndrome (APS), Hypothyroidism, ITP or Rhupus. With Sjogren’s and SLE, the treatment is often the same or very similar, so it doesn’t really matter which is the primary or secondary disease of the two conditions. Anti-phospholipid Syndrome can occur on it’s own but is commonly encountered with SLE. For an APS diagnosis you must have a positive antibody result on repeat samples before you can be treated, as the treatment with blood-thinning medication is very dangerous if you don’t actually have APS.
Raynaud’s Phenomenon – this disease can either be primary – on it’s own in isolation with no other associated condition; or secondary, as part of an autoimmune disease such as SLE or scleroderma. The colour spectrum can vary from white to blue to red or black (not everyone gets all three, can just be one). Colour changes in extremities (predominantly hands and feet) can also be accompanied by numbness or tingling. There are two main types of management; conservative (pre-emptive actions) such as hand care, keeping warm, stopping smoking, exercise (increases circulation); and medical (medications) such as Fluoxetine (helps improve circulation), vasodilation (Losartan, ACE inhibitors) which make blood vessels wider. In extremely severe cases and in winter, intravenous drugs such as Iloprost may be given, or Sildenafil (better known as Viagra!).
Fibromyalgia – a term which covers non-specific muscle and joint pain. It is common in the general population (1 in 25 people) and often not directly related to lupus, but can be to other conditions such as osteoarthritis, osteoporosis, carpal tunnel syndrome or lupus myositis. Unlike rheumatoid or osteoarthritis, it doesn’t cause damage to joints, tendons or ligaments (i.e. non-inflammatory); even though it often feels as if it is causing damage. Patients often describe a vicious circle of symptoms formed between widespread pain, sleep disturbance and fatigue. Other features of fibromyalgia include issues with memory (‘fibrofog’), bowel and/or bladder urgency and tingling hands/feet. At present, treatment includes patient education, aerobic exercise, pacing, pain clinic, graded exercise (physio/hydrotherapy), and occupational therapy (energy conservation and management). Medications include low dose Amitriptyline, Pregabalin/Gabapentin, Fluoxetine (all antidepressants which are known to also help with pain, sleep disturbance and low mood). They are always started at the lowest dose, even if not effective and then raised slowly until benefits are achieved.
Dr Jordan concluded by announcing the wonderful news that Addenbrookes has been recognised as a Lupus Centre of Excellence by Lupus UK. An award ceremony will take place later this year at the hospital. She also recognised all the hard work put into the CoE application process, particularly by Shelagh Cheeseman who nominated Addenbrookes; and invited the CLG committee to attend the presentation.
A Q&A session with our panel of guest speakers and Jane Hollis followed the talks.
- that both fibromyalgia and SLE can cause bone pain.
- reason for fybromyalgia being under-diagnosed is mainly due to lack of time in clinic to get to the bottom of it, and that it can be masked by other ailments.
- Coeliac disease is not directly related to SLE. There is probably a higher occurrence in SLE and other autoimmune diseases, due to impaired immune system and weakened tolerances. Problems with Coeliacs, bowel complaints and diet – Dr Jordan has received lots of questions about this recently in clinic. At present, you can be referred to the hospital dietician, but only for severe complaints whereby there are clear physical health issues resulting from the symptoms (e.g. extreme weight loss or malnutrition). She stressed concern over the growing fad of the “Autoimmune Protocol Diet”. It is too restrictive and is based on the ideology of ‘leaky gut’. The recommendation is still a normal, safe and sensible balanced diet, based on eating regular meals. Nothing drastic or impossible to stick to longer term!
- Probiotics? The benefits would largely be if you were showing symptoms of malabsorption. The benefits for lupus sufferer’s is not known.
- It is now recommended that patients stay on Hydroxychloroquine (even after 7 years, when it was previously advised to stop). Advice is to continue but to ensure annual eye tests are completed. New guidelines state that eye examinations should be completed by an opthalmologist and not just an optician.
- With regard to graded exercise, there is currently no specialist lupus physio. The pain clinic or occupational therapy can refer you to specialist physio for specific ailments. Your GP can refer you locally for physio.
- GP’s often ‘blame’ my lupus for new symptoms. Jane Hollis pointed out the importance of your GP ruling out other secondary causes first, before ‘blaming’ lupus or referring you back to your SLE consultant. For example, an underlying infection may have triggered your lupus. Blood test results should be reviewed before actioning any new lupus treatments or making adjustments to existing medication, such as increasing steroids. [Dr Jordan, along with Professor Hughes is publishing a special issue of a GP Journal with the aim of imparting increased SLE knowledge and awareness to GP’s nationwide].
To conclude, Hugo Tordesillas was introduced. He is a new lupus research nurse tasked with taking forward lupus trials, which Jane Hollis no longer has time to fulfil due to her increased work load. He will continue to assist Jane will her role as Specialist Lupus Nurse.
Davina closed the afternoon session and thanked everyone for their attendance and support. Bottles of wine were handed out to guest speakers as a small token of the CLG’s appreciation for them giving up their Saturday for us!