Hi. I need some advice. My partner was diagnosed with discoid lupus 6 years ago. His sister has systemic lupus for 15 years and hers it managed by anti malaria tablets. Weve seen specialists and been to lupus clinic at st.thomas hospital in london. He has flare ups where he will have full blown systemic lupus symptoms for a few days. They have tried him on steroids and anti malaria tablets and he was physically sick on these meds and vomiting. The flare ups have reduced but he has now been diagnosed with high blood pressure, given meds and sent for blood test. Blood test revealed issues with cholesterol and liver. Receptionist told him this and booked him in for phonecall with Gp in a weeks time.im not having that and will get him appt with gp on monday. He does need to lose a bit a weight but only around 20 pounds. Im worried that issues with blood pressure, cholesterol and liver may all be connected with the lupus. Diet wise its very healthy.
Any advice would be greatly appreciated. Specialists have always said that if his blood was tested during flare up it may show systemic.of course its not that easy to get blood test when he does have a flare up.
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Monkeypants
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!
I am sorry to read your news and understand how worried you feel. I must stress that I am not a medical doctor ad cannot give any medical advice.
It appears that your partner comes from a family with autoimmune diseases. My first point is to say that blood tests alone cannot diagnose SLE! This is why a specialist in SLE is needed because it is diagnosed clinically, over time. Not every patient has positive ANA, for example. This is why many women have gone undiagnosed for decades. I mention women because women, during their child-bearing years, women out-number men with a ratio of 9:1. There is a clinical paper written by Dr Graham RV Hughes, one of the foremost experts in SLE, to help doctors to make a diagnosis of SLE; & a video at LUpus Patients Understanding & Support (LUPUS):
It is uncommon for people with Discoid lupus, to develop systemic lupus erythematosus. Approximately 10 percent of people with discoid lupus later develop lupus in other organ systems, but these people probably already had systemic lupus with the skin rash as the first symptom.
It is very important your partner sees a lupus specialist, including a dermatologist who specialises in discoid lupus.
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Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
Don't be at your wits end! If you want to talk more privately join LUpus Patients Understanding & Support (LUPUS) & message me. There is every good reason to be optimistic! Discoid Lupus can be managed. Sometimes it takes a while to find the best combination of medication!
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Lazy or Lupus or depression
Maybe and maybe not Lupus
Could this be my lupus or something else
