LECTURE NOTES AND SLIDES AT FOOT OF THIS PAGE
Notes taken during a meeting of the Cambridge Sjögren’s Syndrome Group held at the Cancer Research Institute, Addenbrookes Campus at 11:00 am on 12 Oct 2016
The meeting took the form of a presentation by Dr Natasha Jordan, a consultant in Rheumatology and Vasculitis at Addenbrookes Hospital.
Carol opened the meeting by giving a brief outline of the group’s history and said that this was a very special event because Dr Jordan is the most senior specialist to have addressed the group since its formation.
Dr Jordan’s talk was supplemented by a comprehensive visual presentation which has been made available to everyone at www.sjögrenscambs.co.uk these notes are recorded during her talk and include questions and answers.
Overview of symptoms
Sjögrens Syndrome is an autoimmune disease, that is, one in which the body attacks itself. In this case glands are attacked, particularly the lacrimal and saliva glands resulting in dry eyes and dry mouth where lack of saliva can result in increased likelihood of infection. Other autoimmune diseases include Lupus and Rheumatoid arthritis.
Fatigue is a symptom common to most chronic diseases, pain and joint aches go together with fatigue. Symptoms like IBS are due to dryness. There can be some photosensitivity but this is more common in Lupus. Other symptoms can include poor circulation, headaches from inflamed blood vessels, purple spots on legs.
Dr Jordan explained that Sjögrens is defined as primary when there is no other rheumatic disease present and secondary when the main problem is caused by another rheumatic disease. She also said that Sjögrens can increase the risk of lymphoma above normal but the risk remains low. Symptoms are persistent enlargement of a gland combined with night sweats and unexplained weight loss.
Management of Fatigue
Dr Jordan explained that the fatigue experienced by Sjögrens and other chronic disease patients is not just normal tiredness but a profound weariness which comes and goes without warning. The fatigue is multifactorial with many contributions to its cause so that even if other Sjögrens symptoms are not severe, fatigue can be present. There can be mental and emotional features as well as physical. For example a mental ’fog’ making word finding difficult or emotional tears for no apparent reason.
Various ways of managing fatigue were suggested:
Problem solving - analyse lifestyle and recognise triggers, identify alternative ways of achieving tasks, plan activities in advance, space out activities.
Prioritising - Assess the relative need for a job to be done and timetable accordingly.
Pacing - break down tasks into chunks. Make use of a diary or chart.
Dr Jordan emphasised the need to make family and friends aware of how profound the fatigue is, if they are not told they have no way of knowing and their expectations will remain daunting. Learn to say no, explaining the reasons and the consequences.
Surprisingly increased physical activity helps to reduce fatigue but start low and go slow then build up. A physiotherapist should be able to provide a graded exercise programme and an occupational therapist may be able to give advice on pacing.
Stress and anxiety don’t help to reduce fatigue. Dr Jordan suggested relaxation techniques such as mindfullness could be tried. She emphasised the importance of sleep quality saying that winding down before bed time and going to bed at the same time each night are important. Caffeine and alcohol intake should be kept low. Painkillers before going to bed should help reduce pain induced wakefullness. The benefit of a day time nap, she said, varied with individuals, many people finding that an interruption to their natural circadian rhythm causes lack of night time sleep. A healthy diet without excess or too little is important.
Dr Jordan confirmed that research into Sjögrens Syndrome currently lags behind other autoimmune diseases but she said that new medication would be similar irrespective of the type of autoimmune disease. She mentioned that three, or maybe more, studies of Sjögrens Syndrome are about to start and introduced a number of collaborators from the GlaxSmithKlein clinical research unit who would be involved and said that they would be interested in talking to Sjögrens Group members after the meeting. She felt that there could be exciting times ahead!
Questions from the floor
Qu. What results are there from the recent Retoximab trial?
Ans. There has been some success in the treatment of Lupus and Rheumatoid Arthritis. As far as Sjögrens is concerned the results are disappointing but are not being dismissed completely.
Qu. Should I be having the annual ‘flu vaccination?
Ans. Dr Jordan said she advises her patients to have the vaccination although some people do have a reaction against it. She emphasised that if they are in the middle of a Sjögrens flare up, wait until this is over before having the vaccination. She added that the GP should have a good understanding of this and would advise accordingly. (There were sceptical mutterings from the floor at this point.)
Qu. Is there a link between PBC and Sjögrens Syndrome?
Ans. PBC (primary biliary cirrhosis) is a liver disease and regular liver function tests should be undertaken to monitor this. The rheumatologist and a liver specialist would normally co-operate.
Qu. My primary condition is Lupus, my eye inflammation is not helped by the normally used dry eye drops.
Ans. Response was unclear.
Qu. For what is Methotrexate prescribed?
Ans. It is used in Sjögrens Syndrome with primary Rheumatoid Arthritis. It is a good drug but has gastro-enteritis side effects.
Qu. Are there allergies linked to Sjögrens Syndrome?
Ans. Most commonly experienced by patients with fibromyalgia
Qu. My ESR (Erythrocyte Sedimentation Rate) causes concern.
Ans. It is normal for ESR, an inflammation marker, to change with age therefore measurements outside the normal range are not necessarily cause for concern. It is more important to look for short term changes in value.
Qu. Will Hydroxychloroquine help?
Ans. Hydroxychloroquine is prescribed frequently, it is immuno regulatory and a relatively mild treatment.
Qu. How frequently should I see a consultant rheumatologist?
Ans. Annually is sufficient to check that all is well but if coping with symptoms of dry eye and dry mouth and no other symptoms regular visits are not necessary.
Qu. What about flare ups or increased symptoms?
Ans. See your GP. Some GPs will re-refer to a specialist. There is a rheumatology advice line at Addenbrookes (for Addenbrookes patients only) A specialist Lupus nurse is available but currently no Sjögrens nurse.
Qu. Would a pro-forma be useful to identify symptoms
Ans. Some patients come with a list of symptoms but it is most important to bring a list of current medication.
Qu. Low saliva levels and a cold can have frightening effects
Ans. It is important to make sure that this does not evolve into a chest infection. Try to cough up congestion as much as possible. See a pharmacist for decongestants.
End of questions
Carol thanked Dr Jordan and said that not only was the talk interesting and helpful but the opportunity to have questions answered was extremely useful.