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Experiences with

Lupus

  • joint and muscle pain
  • extreme tiredness that will not go away no matter how much you rest
  • rashes – often over the nose and cheeks

These are the main symptoms of lupus.

You might also have:

  • headaches
  • mouth sores
  • high temperature
  • hair loss
  • sensitivity to light (causing rashes on uncovered skin)

Lupus is better managed if it's found and treated early.

Treatment for lupus

Lupus is generally treated using:

  • anti-inflammatory medicines like ibuprofen
  • hydroxychloroquine for fatigue and skin and joint problems
  • steroid tablets, injections and creams for kidney inflammation and rashes

Two medicines, rituximab and belimumab, are sometimes used to treat severe lupus. These work on the immune system to reduce the number of antibodies in the blood.

Living with lupus: things you can do yourself

Although medicines are important in controlling lupus, you can help manage your symptoms and reduce the risk of it getting worse.

  • use high-factor (50+) sunscreen – you can get it on prescription if you have lupus

  • learn to pace yourself to avoid getting too tired

  • try to stay active even on a bad day

  • try relaxation techniques to manage stress – stress can make symptoms worse

  • wear a hat in the sun

  • tell your employer about your condition – you might be able to adjust your working pattern

  • ask for help from family, friends and health professionals

  • eat a healthy, balanced diet, including vitamin D and calcium

  • do not smoke – stopping smoking is the most important thing to do if you have lupus

  • do not sit in direct sunlight or spend a lot of time in rooms with fluorescent lights

Causes of lupus

Lupus is an autoimmune disease. This means the body's natural defence system (immune system) attacks healthy parts of your body.

It's not contagious.

The causes of lupus are not fully understood. Possible causes include:

  • viral infection
  • certain medicines
  • sunlight
  • puberty
  • childbirth
  • menopause

More women than men get lupus, and it's more common in black and Asian women.

Symptoms of lupus include joint and muscle pain, extreme tiredness and a rash on your face.

There's currently no cure for lupus, but the symptoms can often be treated with medicines that reduce inflammation in your body, such as steroids.

Lupus is caused by your immune system mistakenly attacking healthy parts of your body. It's not fully understood why this happens.

Related links

Lupus

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13,609 public posts

Lupus community aims to improve visibility this Awareness Month

accelerating lupus advances.
accelerating lupus advances.
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support
27 days ago

Lupus

So the question I'm throwing out to you more experienced sufferers is can you have fibro and lupus I know the symptoms can cross over to both? My blood work says I don't have lupus but I have read that negative blood screen is not a definitive diagnosis?? Sorry about long message.
So the question I'm throwing out to you more experienced sufferers is can you have fibro and lupus I know the symptoms can cross over to both? My blood work says I don't have lupus but I have read that negative blood screen is not a definitive diagnosis?? Sorry about long message.
Juju1971 profile image
Juju1971
in Fibromyalgia Action UK
14 days ago

Lupus

Was wondering if Lupus is also included
Was wondering if Lupus is also included
Shal0317 profile image
Shal0317
in My MSAA Community
2 months ago
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Study testing a lupus management app recruiting now

A new study is testing a lupus-management app and is looking for participants with lupus or rheumatoid arthritis.
A new study is testing a lupus-management app and is looking for participants with lupus or rheumatoid arthritis.
Debbie_kinsey profile image
Debbie_kinsey
Administratorin LUPUS UK
18 days ago

Symptoms of cutaneous lupus

Subacute cutaneous Lupus..hair loss and lupus chilblains!!
Subacute cutaneous Lupus..hair loss and lupus chilblains!!
Joanus profile image
Joanus
in LUPUS UK
3 months ago

Discoid Lupus

hi I was wondering if fatigue and mind fog are associated with discoid lupus? Or is it just with systemic lupus?
hi I was wondering if fatigue and mind fog are associated with discoid lupus? Or is it just with systemic lupus?
Bhudhi profile image
Bhudhi
in LUPUS UK
2 months ago

Young Persons (aged 10 - 18) event for WORD Day in London on Sat 11th March

LUPUS UK and Great Ormond Street Hospital (GOSH) are pleased to host a Lupus Café Family Event as part of World yOung Rheumatic Diseases (WORD) Day this year. This event is for young people (aged 10 to 18) living with lupus and their families.
LUPUS UK and Great Ormond Street Hospital (GOSH) are pleased to host a Lupus Café Family Event as part of World yOung Rheumatic Diseases (WORD) Day this year. This event is for young people (aged 10 to 18) living with lupus and their families.
Chanpreet_Walia profile image
Chanpreet_Walia
LUPUS UKin LUPUS UK
3 months ago

cutaneous lupus

Hi, is anyone taking the immunosuppressant mycophenolate for cutaneous lupus /discoid lupus ? If so, has it worked and what side effects ? Many thanks
Hi, is anyone taking the immunosuppressant mycophenolate for cutaneous lupus /discoid lupus ? If so, has it worked and what side effects ? Many thanks
Nellons profile image
Nellons
in LUPUS UK
2 months ago

Lupus and Ramadan resource now available via LUPUS UK's website

The webinar also includes a Q&A where Professor Rahman answers questions sent in from the lupus community about fasting - https://www.lupusuk.org.uk/lupus-and-ramadan/ Best wishes, Chanpreet 💜
The webinar also includes a Q&A where Professor Rahman answers questions sent in from the lupus community about fasting - https://www.lupusuk.org.uk/lupus-and-ramadan/ Best wishes, Chanpreet 💜
Chanpreet_Walia profile image
Chanpreet_Walia
LUPUS UKin LUPUS UK
2 months ago

Lupus Information Day - Sat, 13th May in Cardiff, Wales

LUPUS UK will be having their Lupus Information Day in Cardiff, Wales on Saturday 13th May. The information day event is open to anyone, providing they book a ticket which is free of charge. Refreshments will be provided in the afternoon.
LUPUS UK will be having their Lupus Information Day in Cardiff, Wales on Saturday 13th May. The information day event is open to anyone, providing they book a ticket which is free of charge. Refreshments will be provided in the afternoon.
Chanpreet_Walia profile image
Chanpreet_Walia
LUPUS UKin LUPUS UK
2 months ago

Lupus and upper and lower and mid back pains.

Hi everyone, I was diagnosed with lupus 3 years ago and I had back pains (sciatica, so back pains is not new) before my diagnosis with lupus. But recently, I have upper and mid back pains especially when I bend forward 30 degrees.
Hi everyone, I was diagnosed with lupus 3 years ago and I had back pains (sciatica, so back pains is not new) before my diagnosis with lupus. But recently, I have upper and mid back pains especially when I bend forward 30 degrees.
Sunflowers_2020 profile image
Sunflowers_2020
in LUPUS UK
2 months ago

Lupus Rash?

Hi, I have Lupus SLE and have had this rash on my shin for sometime now - also on my elbows and underneath my breast. I showed it to my rheumatologist at my last appointment and he said it was discoid lupus.
Hi, I have Lupus SLE and have had this rash on my shin for sometime now - also on my elbows and underneath my breast. I showed it to my rheumatologist at my last appointment and he said it was discoid lupus.
SamRigs profile image
SamRigs
in LUPUS UK
21 hours ago

Better measures of disease severity needed in lupus, study says

The study, “Meeting report: the ALPHA project: a stakeholder meeting on lupus clinical trial outcome measures and the patient perspective,” was published in the journal Lupus Science & Medicine.
The study, “Meeting report: the ALPHA project: a stakeholder meeting on lupus clinical trial outcome measures and the patient perspective,” was published in the journal Lupus Science & Medicine.
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support
3 months ago

Low red blood cells

Hi, I have cutaneous lupus and now have low red blood cells. Please does anyone have any advice on what to eat to help my iron levels thar doesn't clash with what to avoid for my lupus
Hi, I have cutaneous lupus and now have low red blood cells. Please does anyone have any advice on what to eat to help my iron levels thar doesn't clash with what to avoid for my lupus
Hidden profile image
Hidden
in LUPUS UK
2 months ago

NICE recommends voclosporin to treat lupus nephritis

NICE have made a recommendation to the NHS that a new treatment, voclosporin, can be used in combination with mycophenolate mofetil (MMF) to treat some patients with lupus nephritis. This is only the second treatment developed specifically for lupus to be approved in within the UK. Exciting stuff!
NICE have made a recommendation to the NHS that a new treatment, voclosporin, can be used in combination with mycophenolate mofetil (MMF) to treat some patients with lupus nephritis. This is only the second treatment developed specifically for lupus to be approved in within the UK. Exciting stuff!
Debbie_kinsey profile image
Debbie_kinsey
Administratorin LUPUS UK
2 months ago

Lupkynis approved in Switzerland to treat adults with lupus nephritis

nephritis, a complication of lupus characterized by kidney damage and inflammation.
nephritis, a complication of lupus characterized by kidney damage and inflammation.
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support
27 days ago

suspected lupus

Hi all, just looking for any advice on your own experiences when you suspected lupus. My dr thinks I either have lupus or CFS however I have a lot of symptoms of lupus and the doctors keep palming me off.
Hi all, just looking for any advice on your own experiences when you suspected lupus. My dr thinks I either have lupus or CFS however I have a lot of symptoms of lupus and the doctors keep palming me off.
shadow30 profile image
shadow30
in LUPUS UK
2 months ago

Diagnosis - What to expect?

, so I finally managed to get the doctor to request a blood test for lupus markers, - results due back this week..A few questions..How will Lupus show up on my blood tests - what should I look for? If I do have Lupus, will any treatment be different than for my Sjogren's?
, so I finally managed to get the doctor to request a blood test for lupus markers, - results due back this week..A few questions..How will Lupus show up on my blood tests - what should I look for? If I do have Lupus, will any treatment be different than for my Sjogren's?
MyAngels profile image
MyAngels
in LUPUS UK
22 days ago

cutaneous lupus

Does anyone else suffer with this type of skin condition associated with Lupus ?
Does anyone else suffer with this type of skin condition associated with Lupus ?
Nellons profile image
Nellons
in LUPUS UK
2 months ago

Lupus rashes

Are these lupus rashes? I have rashes from 1 month ago, but they were few in number .From 2 days a go I developed a lot of rashes in my hands neck shoulder
Are these lupus rashes? I have rashes from 1 month ago, but they were few in number .From 2 days a go I developed a lot of rashes in my hands neck shoulder
Camillaadrian profile image
Camillaadrian
in LUPUS UK
2 months ago
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