12th CONVENTION OF ELEF
TRINITY COLLEGE DUBLIN 14TH SEPTEMBER 2000
Delegates from Belgium (french not flemmish), France, Ireland, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland and the UK attended. Not present: Germany, Iceland, Israel, Finland.
Barbara O Neill gave a welcome address. Brian Hanner opened the conference. The delegates introduced themselves. Brian gave a report of what has happened during the last year.
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Dr. Gerald Wall and a postgraduate student, Maureen O sullivan gave a talk about a study they have done on SLE in Ireland on anti-DNA autoantibodies produced in SLE. She is going to make a report when the study is finished. 9-10 billion antibodies are found in the body. They bind to different bacteria and virus. Some of these will bind to self proteins. Autoantibodies to DNA are found only in SLE. Using a phage selection procedure in the laboratory one can mimic the process that occurs in the SLE patient. More research will be carried out. Dr. Gerald Wall presented the study of SLE and results of the survey regarding the Irish Lupus Support Group. Please see the printed report given to each delegate. The delegates were able to ask Dr. Wall questions about the study afterwards.
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TRINITY COLLEGE DUBLIN 15TH SEPTEMBER 2000
THE DELEGATES GAVE THEIR REPORTS. Please see the complete reports in the booklet.
Emeir Duffy from the Ireland Centre for Diet and Health, University of Ulster Coleraine, Lupus Research Group, Musculoskeletal Education and Research Unit, Musgrave Park Hospital, Belfast, talked about research being carried out into SLE and diet. Questionnaire sent out to 400 SLE patients with various questions about diet Medicines, smoking, seasonal variations etc. Average age 48 years Symptoms worse in winter Most people changed their diet when they were diagnosed, they reduced salt and fat etc, advised by doctors, friends, magazines etc. Various supplements were taken without the patient really knowing what they were doing. Many were sensitive to foods mainly dairy products. Regarding vegetables and fruits, tomatoes were responsible for the highest number of cases of sensitivity. The use of complementary medicine has increased enormously Aim of study. Supplementation with omega 3 pure fish oil 3grams daily and copper to see if there is an improvement in pain and general well being. Copper is found in green vegetables and pulses. Eat plenty of brocolli!
TRINITY COLLEGE DUBLIN 16TH SEPTEMBER 2000
PATIENT WORKSHOP TOGETHER WITH THE IRISH LUPUS GROUP
DR. David D`Cruz and Jean-Paul Sanders
QUESTIONS:
So many people attended this session, each subject had to be divided into two groups!
ANSWERS:
Group 1a: Pregnancy often presents problems in Lupus patients. Patients receive too
little information. The drugs used give side effects. One cannot enter lightly into
pregnancy and it is very worrying. Maternity hospitals know very little about Lupus.
Dr. D`Cruz The best thing is to plan your pregnancy and have a consultation with your
rheumatologist. The Lupus disease should be stable before pregnancy. "A guide for
nurses" from Lupus UK
Group2A: Problem for partners is to become aware of Lupus. General doctors are too slow
in diagnosing the disease. Lupus patients easily try to hide their disease. They often
look well but are very ill. The patient should be more open.
Group 2B: A Lupus patient should bring his/her partner along to the doctor, so that they
are both informed. A relative support group would be nice. The doctors should have a list
available for contact. A Lupus sufferer should not be afraid to ask consultants questions.
The doctors should come down from their high horses. The lupus sufferer must be more open
Dr. D`Cruz. Consultants do have too much do, but they should try and make time to explain
things to new Lupus patients.
Group 3A: Information on Lupus is vital. We receive a lot of information from America,
UK, Ireland etc. We need results of research. Why does it take such a long time. We
suggest that any new developments on Lupus are spread over the world.
Dr. D`Cruz: Internet is a good way to disseminate information, though one has to be
selective.
Group 4A: Too little help from doctors and nurses, they often do not know what Lupus
is. We feel isolated. Is the medication causing our flares? Beta interferon is used for
some diseases, why is this not given to Lupus patients? Diagnosis takes too long, we are
often treated for other diseases that we don`t have, before we get the correct diagnosis.
Group 4B: Are delighted with the support group, but would like more information from the
doctors. What about calcium tablets?
Group 4C: Lack of information from doctors, especially about drugs. We need information
about Lupus and about how to contact the Lupus patient association in the country.
Information must be up to date. Workshops with doctors and nurses would be ideal. Family
members should be brought along to consultations and workshops.
Dr. D`Cruz: Supplements- calcium to patients taking more than 7.5mg daily, together with
vitaminD. Cycophosphamide given as puls therapy is an alternative for patients with renal
disease. Anti-malaria drugs is a fairly safe Lupus drug.
Group 5A: Complementary medicine. Vitamin B12 to reduce vascular damage. Psychotherapy,
bioenergy, acupuncture, homeopathy, yoga, electromagnetic therapy, meditation, trace
elements.
Group 5B. Some people are frightened of complementary medicine. Doctors are often
sceptical. A list of questions about various complementary therapies could be presented to
your doctor to ask his opinion. We are advised to eat five vegetables/fruit daily. What
about allergies? Holistic healing?
Dr. D`Cruz: Most patients try complementary medicine. Tell your doctor what you are
taking, herbs may cause liver toxicity for example. Do not spend vast amounts of money on
untried remedies. Do not stop taking your traditional medicine.
TALK BY DR DAVID D`CRUZ
Only 5% of patients with discoid lupus get SLE. Arthritis in Lupus is non destructive. Various tests, like the anti ANA and anti DNA. Although even if you do not have these antibodies, you can have lupus. Thrombosis, vasculitis, renal disease and CNS Involvement are some of the complications. Hughes syndrome with clotting, abortions and stokes. Antiphospholipid antibodies aCL, LA. Treatment of Hughes symptom is warfarin. Renal failure is no longer the main cause of death in Lupus patients, due to early and regular urine testing. Blood and protein in the urine and the presence of fragmented red cells, will need treatment. Small doses or puls therapy cyclophosphamide is normally used. Antimalarials, corticosteroids. Azathioprine, Cyclophosphamide, Methotrexate and Cyclosporin are the current therapies for SLE. Antimalaria drug used for Lupus patients. Patients not on Plaquenil had more serious and more frequent flare ups. Recurrent fetal loss- more than three, and the presence and APS, only 10-20% chance of survival for the baby. If the patient takesAspirin, a 42% chance, Aspirin plus heparin 72%. Patient must be evaluated pre conceptal by a team. Full hospital care, scans, investigation of symptoms, baby delivered at a hospital with premature unit. Lupus flares in pregnancy. Prednisone, NSAID`S, hydroxychloroquine, azathioprine.
FATIQUE IN LUPUS: EXTRAORDINARY TIREDNESS. ENDURING SUBJECTIVE SENSATION OF GENERALISED TIREDNESS OR EXHAUSTION.
Different techniques are available to measure fatigue. Disease activity, damage, sleep, mood, quality of life, anxiety, depression. Fatigue is strongly associated with a disability to function properly in daily life. Exercise is important in the treatment of Lupus. Muscle strength and aerobic fitness was measures in 44 female SLE patients and was shown to be half as good as in normal women. Exercise is therefore advocated in women with SLE.
Questions:
The future for Lupus patients is really looking up and we are very optimistic