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

13,606 public posts

Pain after eating

I have lupus sjogrens and adreanal insufficiency. Please can anyone help!
I have lupus sjogrens and adreanal insufficiency. Please can anyone help!
daniel55 profile image
daniel55
in LUPUS UK
3 years ago

Update from appointment

I took my notes which he scanned over (not sure he read) but I used them to help me explain everything he confirmed it is lupus and diagnosed the Raynaud’s - he was mentioning maybe a bit of fibromyalgia too but he quickly went off the subject but then said hmm lots of symptoms maybe lupus/UCTD he wants
I took my notes which he scanned over (not sure he read) but I used them to help me explain everything he confirmed it is lupus and diagnosed the Raynaud’s - he was mentioning maybe a bit of fibromyalgia too but he quickly went off the subject but then said hmm lots of symptoms maybe lupus/UCTD he wants
Leenie0811 profile image
Leenie0811
in LUPUS UK
3 years ago

Can lupus cause lactose intolerance?

But yeah, can lupus cause an intolerance to things?
But yeah, can lupus cause an intolerance to things?
Sandy1212 profile image
Sandy1212
in LUPUS UK
3 years ago
Want to take advantage of all our features? Just log in!
or

Physical Activity Programme run by the NHS

I am a little nervous being in the gym with other people and watching my lack of mobility due to Lupus. I am not sure how people will react as I am using a crutch. If anyone is currently or doing the physical activity programme. I would love to hear about your experiences.
I am a little nervous being in the gym with other people and watching my lack of mobility due to Lupus. I am not sure how people will react as I am using a crutch. If anyone is currently or doing the physical activity programme. I would love to hear about your experiences.
SLE-Warrior profile image
SLE-Warrior
in Weight Loss Support
3 years ago

Does this look like a lupus rash?

Hello, I hope everyone is doing great! I've never had any symptoms (no hair loss, joint pains, fever, fatigue etc.) and I only showed positive ANA after a neurological irelevant blood test. My neurologist ordered ALL the antibodies (ENA, b2, ANCA, AMA etc.) and they are all negative. But he said I should
Hello, I hope everyone is doing great! I've never had any symptoms (no hair loss, joint pains, fever, fatigue etc.) and I only showed positive ANA after a neurological irelevant blood test. My neurologist ordered ALL the antibodies (ENA, b2, ANCA, AMA etc.) and they are all negative. But he said I should
FF96 profile image
FF96
in LUPUS UK
3 years ago

Loneliness

I’m not sure I can cope with this situation any longer, during covid ,lupus flared up , the appointments were only by phone just prescribed cortisone, I did put 10 kg on ( over 1 st) and I don’t feel any better , infacts worst .
I’m not sure I can cope with this situation any longer, during covid ,lupus flared up , the appointments were only by phone just prescribed cortisone, I did put 10 kg on ( over 1 st) and I don’t feel any better , infacts worst .
Melaxx profile image
Melaxx
in LUPUS UK
3 years ago

Kidney problems and dialysis

Hi all I have recently just joined this group, I was diagnosed with Lupus about 10 years now. However my symptoms had reduced or almost gone but now it seems like it's has come back with avegence and affected both my kidneys. Has anyone experienced this. Thanks for all the support
Hi all I have recently just joined this group, I was diagnosed with Lupus about 10 years now. However my symptoms had reduced or almost gone but now it seems like it's has come back with avegence and affected both my kidneys. Has anyone experienced this. Thanks for all the support
Esfavour profile image
Esfavour
in LUPUS UK
3 years ago

Too much candy

But I think my lupus always acts up with joint pain and stuff when I have too much candy this time this is so painful I can't even think about my joints
But I think my lupus always acts up with joint pain and stuff when I have too much candy this time this is so painful I can't even think about my joints
rockinr_56 profile image
rockinr_56
in LUPUS UK
3 years ago

Has anyone written to their GP to ask to be referred to a different Rheumy?

Should I list why I'm unhappy with the current rheumy or explain that I want to be referred to a rheumy in London because the London rheumy is more used to dealing with lupus and sjogren? London is within commuting distance for me and I like the practice there.
Should I list why I'm unhappy with the current rheumy or explain that I want to be referred to a rheumy in London because the London rheumy is more used to dealing with lupus and sjogren? London is within commuting distance for me and I like the practice there.
Insomniacette profile image
Insomniacette
in LUPUS UK
3 years ago

New Study Regarding Covid 19 and Lupus, RA

https://www.webmd.com/lung/news/20200904/covid-19-ills-no-greater-for-those-with-lupus-rheumatoid-arthritis?ecd=wnl_rhu_091120&ctr=wnl-rhu-091120_nsl-LeadModule_cta&mb=mZoMLJ1ibpHezUilgbUoxWdEpmNqbUHLEi3cfORfVxo%3d
https://www.webmd.com/lung/news/20200904/covid-19-ills-no-greater-for-those-with-lupus-rheumatoid-arthritis?ecd=wnl_rhu_091120&ctr=wnl-rhu-091120_nsl-LeadModule_cta&mb=mZoMLJ1ibpHezUilgbUoxWdEpmNqbUHLEi3cfORfVxo%3d
AKDellitt profile image
AKDellitt
in NRAS
3 years ago

MRI interpretation help

My Rheumatologist sent me for another(Aug 2020 attached) as part of the work up that led to my Lupus diagnosis. I obtained a copy this morning to keep for my records. Does anyone understand this? there seems to be a lot more going on now.
My Rheumatologist sent me for another(Aug 2020 attached) as part of the work up that led to my Lupus diagnosis. I obtained a copy this morning to keep for my records. Does anyone understand this? there seems to be a lot more going on now.
patmackfin profile image
patmackfin
in LUPUS UK
3 years ago

Male with lupus? Treatment advice

He’s 23 and was diagnosed with lupus about 3 years ago. He has never met another male with lupus. Currently he has had a flare up and is suffering from fatigue, chest pains and swellings of his joints and has had to take steroids.
He’s 23 and was diagnosed with lupus about 3 years ago. He has never met another male with lupus. Currently he has had a flare up and is suffering from fatigue, chest pains and swellings of his joints and has had to take steroids.
Pizzanightin profile image
Pizzanightin
in LUPUS UK
3 years ago

Does anyone else get a lot of muscle tension?

Is this a Lupus thing? Or could it be steroid related? I'm currently taking 9mg Prednisolone (trying to slowly reduce) and 200/400mg Hydroxychloroquine. Thanks very much
Is this a Lupus thing? Or could it be steroid related? I'm currently taking 9mg Prednisolone (trying to slowly reduce) and 200/400mg Hydroxychloroquine. Thanks very much
Choccy8 profile image
Choccy8
in LUPUS UK
3 years ago

Do you know someone who can take part in an adolescents (12-17 years old) SLE research study?

., an independent research company specialising in healthcare to carry out a formative research study of an auto injector device for Systemic Lupus Erythematosus (SLE).
., an independent research company specialising in healthcare to carry out a formative research study of an auto injector device for Systemic Lupus Erythematosus (SLE).
Chanpreet_Walia profile image
Chanpreet_Walia
LUPUS UKin LUPUS UK
3 years ago

Taking Steroids before my first Rheumatology appointment?

Hello, I am being investigated for autoimmune disorders including lupus.
Hello, I am being investigated for autoimmune disorders including lupus.
ALJ780 profile image
ALJ780
in LUPUS UK
3 years ago

People of HU – Where are they now?

I don't think this woman has Lupus as sometimes we do see this in patients with CFS. I am not quite sure of its significance. I cannot give you any idea of what is going to happen to this woman in the future.
I don't think this woman has Lupus as sometimes we do see this in patients with CFS. I am not quite sure of its significance. I cannot give you any idea of what is going to happen to this woman in the future.
SaskiaHU profile image
SaskiaHU
HealthUnlockedin HealthUnlocked Blog
2 years ago

Financial cost of Lupus

When I read posts from newly diagnosed lupus warriors on here I think about the things I wish I had known early on. One thing in particular is how much it costs and how long it takes to find the foods/accessories and activities that are helpful or essential.
When I read posts from newly diagnosed lupus warriors on here I think about the things I wish I had known early on. One thing in particular is how much it costs and how long it takes to find the foods/accessories and activities that are helpful or essential.
Cathyan profile image
Cathyan
in LUPUS UK
3 years ago

Male with lupus? Treatment advice

We would love to hear from people about their advice and how they manage lupus (diet, lifestyle ect) particularly males as we have never known/met any other males with lupus. We are from North Yorkshire So if you could recommend any other groups nearby for us to join that would be great too!
We would love to hear from people about their advice and how they manage lupus (diet, lifestyle ect) particularly males as we have never known/met any other males with lupus. We are from North Yorkshire So if you could recommend any other groups nearby for us to join that would be great too!
Pizzanightin profile image
Pizzanightin
in LUPUS UK
3 years ago

How Chronic Illness Patients Can Cope with Seasonal Affective Disorder and Depression During COVID-19

Patients Understanding & Support (LUPUS) has its own in-house psychotherapist. Please message me for help. Cognitive behavioral therapy (CBT), which helps you become aware of negative or inaccurate thought patterns so you can more effectively respond to challenging situations.
Patients Understanding & Support (LUPUS) has its own in-house psychotherapist. Please message me for help. Cognitive behavioral therapy (CBT), which helps you become aware of negative or inaccurate thought patterns so you can more effectively respond to challenging situations.
lupus-support1 profile image
lupus-support1
Administratorin LUpus Patients Understanding and Support
2 years ago

Vaccines for the immune compromised

It is from 2018, however the CDC statement on Shingrix is still making the statement about not knowing enough about this vaccine in people with immune-related diseases (like rheumatoid arthritis, lupus, and others) so the information has not yet been updated to put our minds at rest. https://www.medpagetoday.com
It is from 2018, however the CDC statement on Shingrix is still making the statement about not knowing enough about this vaccine in people with immune-related diseases (like rheumatoid arthritis, lupus, and others) so the information has not yet been updated to put our minds at rest. https://www.medpagetoday.com
HeronNS profile image
HeronNS
in PMRGCAuk
3 years ago
  • 1
  • ...
  • 99
  • 100
  • 60
  • 70
  • 80
  • 90
  • 100
Filter results
Posted in
Sort by
HealthUnlocked
© 2023 All rights reserved.

Company

  • About Us
  • Partner with us
  • Careers

Product

  • Health terms A to Z
  • Communities A to Z
  • Start a Community

Support

  • Contact us