HealthUnlockedHealthUnlocked
AboutLog in

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

HealthUnlocked contains information from NHS Digital, licensed under the current version of the Open Government Licence

  • Posts

  • Communities

12,948 public posts

Lupus Research Alliance Applauds U.S. FDA Approval of AstraZeneca’s anifrolumab-fnia (Saphnelo™) for Systemic Lupus Erythematosus (SLE)

The FDA approved Benlysta (belimumab)—the first targeted therapy for lupus—in 2011 to treat systemic lupus in adults. The FDA later approved Benlysta to treat children with lupus down to 5 years of age.
The FDA approved Benlysta (belimumab)—the first targeted therapy for lupus—in 2011 to treat systemic lupus in adults. The FDA later approved Benlysta to treat children with lupus down to 5 years of age.
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Lupus Foundation of America Celebrates FDA Approval of Saphnelo™ (Anifrolumab-fnia) as a New Treatment for Lupus

SOURCE: https://www.lupus.org/news/fda-approval-of-saphnelo-anifrolumabfnia-new-treatment-lupus Patients Understanding & Support (LUPUS): https://www.lupus-support.org/topic/3373-lupus-foundation-of-america-celebrates-fda-approval-of-saphnelo%E2%84%A2-anifrolumab-fnia-as-a-new-treatment-for-lupus
SOURCE: https://www.lupus.org/news/fda-approval-of-saphnelo-anifrolumabfnia-new-treatment-lupus Patients Understanding & Support (LUPUS): https://www.lupus-support.org/topic/3373-lupus-foundation-of-america-celebrates-fda-approval-of-saphnelo%E2%84%A2-anifrolumab-fnia-as-a-new-treatment-for-lupus
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Lupus?

I’m pretty sure I have Lupus but can’t get a diagnosis. I’ve been told it’s all in my head. From my family and also the doctors I’ve seen. They keep saying it’s anxiety but I know better!! Extreme fatigue, widespread body pain, facial rash they said is Rosacea, Chronic Hives all over, Rosacea?
I’m pretty sure I have Lupus but can’t get a diagnosis. I’ve been told it’s all in my head. From my family and also the doctors I’ve seen. They keep saying it’s anxiety but I know better!! Extreme fatigue, widespread body pain, facial rash they said is Rosacea, Chronic Hives all over, Rosacea?
pherndon profile image
pherndon
in LUPUS UK
Want to take advantage of all our features? Just log in!
or

Lupus and Heart Disease: Why You’re at Increased Risk

https://creakyjoints.org/about-arthritis/lupus/lupus-symptoms/lupus-heart-disease-risk/#1644244954254-e198ddc7-dd37
https://creakyjoints.org/about-arthritis/lupus/lupus-symptoms/lupus-heart-disease-risk/#1644244954254-e198ddc7-dd37
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support

Researchers find a genetic cause of lupus

Read more at https://www.lupusuk.org.uk/researchers-find-a-genetic-cause-of-lupus/
Read more at https://www.lupusuk.org.uk/researchers-find-a-genetic-cause-of-lupus/
Paul_Howard profile image
Paul_Howard
LUPUS UKin LUPUS UK

Lupus

I know Lupus is different in every one, yet has some of the same symptoms that affects all of us in almost the same way.
I know Lupus is different in every one, yet has some of the same symptoms that affects all of us in almost the same way.
Da_vinci profile image
Da_vinci
in LUPUS UK

Thinking of having a tattoo !!

Hi fellow lupus sufferers. I’m thinking of getting a tattoo, has anyone else had one since being diagnosed with lupus. If you have did you experience any problems afterwards ? My lupus is well controlled and I am on Rituximab and methotrexate.
Hi fellow lupus sufferers. I’m thinking of getting a tattoo, has anyone else had one since being diagnosed with lupus. If you have did you experience any problems afterwards ? My lupus is well controlled and I am on Rituximab and methotrexate.
littlemissp profile image
littlemissp
in LUpus Patients Understanding and Support

Lupus Symptoms

Has anyone with Lupus experienced swollen temples?
Has anyone with Lupus experienced swollen temples?
Nylahs profile image
Nylahs
in LUPUS UK

Lupus “Fatigue”

Hey everyone, So I’ve been on hydroxychloroquine for about 6 months now, while I feel it may have helped with my reducing my rash, joint pain, I have been experiencing only what I can think is fatigue? This is a piece from my diary : “Today I feel Wooly headed and completely drained. Drained doesn’
Hey everyone, So I’ve been on hydroxychloroquine for about 6 months now, while I feel it may have helped with my reducing my rash, joint pain, I have been experiencing only what I can think is fatigue? This is a piece from my diary : “Today I feel Wooly headed and completely drained. Drained doesn’
Penelope-Pipin profile image
Penelope-Pipin
in LUPUS UK

Lupus Profundus

Hi I was diagnosed with Profundus about 10 years ago and I am on hydroxychloroquine. Lately if I have a fall or twist an ankle etc it takes months to heal...I have swollen knees after a fall in 2018...they went down a bit but it all seems to be fluid. I asked my gp for fluid tablets after getting no
Hi I was diagnosed with Profundus about 10 years ago and I am on hydroxychloroquine. Lately if I have a fall or twist an ankle etc it takes months to heal...I have swollen knees after a fall in 2018...they went down a bit but it all seems to be fluid. I asked my gp for fluid tablets after getting no
Montysmum1 profile image
Montysmum1
in LUPUS UK

16 and been diagnosed with lupus

My son was diagnosed with lupus last year December. I feel so sorry for him he’s suffering with a lot of pain in fingers. I never knew that at the age of 16 you could get lupus. I was 38 when I was diagnosed.
My son was diagnosed with lupus last year December. I feel so sorry for him he’s suffering with a lot of pain in fingers. I never knew that at the age of 16 you could get lupus. I was 38 when I was diagnosed.
djsema profile image
djsema
in LUPUS UK

Lupus diaries

Hi Everyone, glad to be here.I hope to learn a lot from you all.
Hi Everyone, glad to be here.I hope to learn a lot from you all.
WaakyeGob3 profile image
WaakyeGob3
in LUPUS UK

North West Lupus Group Information Day - 14th May 2022

Hi everyone, Just a quick reminder that the LUPUS UK AGM and Lupus Information Day will take place this Saturday, 14th May 2022 at Village Manchester Bury Hotel, Waterfold Business Park, Rochdale Road, Bury BL9 7BQ.
Hi everyone, Just a quick reminder that the LUPUS UK AGM and Lupus Information Day will take place this Saturday, 14th May 2022 at Village Manchester Bury Hotel, Waterfold Business Park, Rochdale Road, Bury BL9 7BQ.
Paul_Howard profile image
Paul_Howard
LUPUS UKin LUPUS UK

LUPUS UK and EPG Health are collaborating to produce new patient information resources for those living with lupus

LUPUS UK are collaborating with EPG Health in the creation of new patient education resources that will be hosted on the LUPUS UK website and made available to those living with lupus.
LUPUS UK are collaborating with EPG Health in the creation of new patient education resources that will be hosted on the LUPUS UK website and made available to those living with lupus.
Alida_Horne profile image
Alida_Horne
LUPUS UKin LUPUS UK

Lupus rash?

Has anyone been prescribed this for suspected lupus rash?..
Has anyone been prescribed this for suspected lupus rash?..
Lauramonty profile image
Lauramonty
in LUPUS UK

VOLUNTEER EXPERT PATIENTS NEEDED - Moderate/Severe Lupus Nephritis for NICE Appraisal of Voclosporin

Hi everyone, NICE recently announced that they will be conducting a Health Technology Appraisal (HTA) for the use of voclosporin with immunosuppressives for treating lupus nephritis - https://www.nice.org.uk/guidance/indevelopment/gid-ta10878 Voclosporin is a new drug for the treatment of lupus nephritis
Hi everyone, NICE recently announced that they will be conducting a Health Technology Appraisal (HTA) for the use of voclosporin with immunosuppressives for treating lupus nephritis - https://www.nice.org.uk/guidance/indevelopment/gid-ta10878 Voclosporin is a new drug for the treatment of lupus nephritis
Paul_Howard profile image
Paul_Howard
LUPUS UKin LUPUS UK

LUPUS UK WEST LONDON SUPPORT GROUP – NEW FOR 2022

Would you like to connect with other people affected by lupus near you? We are very fortunate to have a LUPUS UK member who has offered to establish a LUPUS UK support group based in West London. For those who are not aware, LUPUS UK has various support groups around the UK.
Would you like to connect with other people affected by lupus near you? We are very fortunate to have a LUPUS UK member who has offered to establish a LUPUS UK support group based in West London. For those who are not aware, LUPUS UK has various support groups around the UK.
Alida_Horne profile image
Alida_Horne
LUPUS UKin LUPUS UK

Purple/ blue hands with Raynaud's?

I read a lot about Raynaud's and Lupus but less about this so was just wondering if anyone else experiences this as part of their Lupus too? I was finally diagnosed after a very long few years!! Thanks people.
I read a lot about Raynaud's and Lupus but less about this so was just wondering if anyone else experiences this as part of their Lupus too? I was finally diagnosed after a very long few years!! Thanks people.
rosyovary profile image
rosyovary
in LUpus Patients Understanding and Support

Purple/blue hands with Raynaud's?

I read a lot about Raynaud's and Lupus but less about this so was just wondering if anyone else experiences this as part of their Lupus too? I was finally diagnosed after a very long few years!! Thanks people.
I read a lot about Raynaud's and Lupus but less about this so was just wondering if anyone else experiences this as part of their Lupus too? I was finally diagnosed after a very long few years!! Thanks people.
rosyovary profile image
rosyovary
in LUPUS UK

Lupus

I'm a guy, 25 years old, with lupus. I have elevated smd1 antigens. How do you think having sex affects lupus activity in men? That is, they need to have sex more or less often to keep their sex hormone levels high? Thanks!
I'm a guy, 25 years old, with lupus. I have elevated smd1 antigens. How do you think having sex affects lupus activity in men? That is, they need to have sex more or less often to keep their sex hormone levels high? Thanks!
ValerianSutidze profile image
ValerianSutidze
in LUPUS UK
  • 1
  • 2
  • ...
  • 100
  • Next page
  • 10
  • 20
  • 30
  • 40
  • 50
  • 60
  • 70
  • 80
  • 90
  • 100
Filter results
Posted in
Sort by
HealthUnlocked
© 2022 All rights reserved.

Company

About Us

Our Team

Partner with us

Careers

Product

Health terms A to Z

Communities A to Z

Start a Community

Support

Help Centre

Community Guidelines

Contact us

Cookies settings