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Experiences with

Lupus

Lupus is a long-term condition that causes joint pain, skin rashes and tiredness. There's no cure, but symptoms can improve if treatment starts early.

Important

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

How lupus is diagnosed

Lupus, also called systemic lupus erythematosus, is not always easy to diagnose because it can be similar to other conditions.

Symptoms include inflammation of different parts of the body including the lungs, heart, liver, joints and kidneys.

The GP will usually do some blood tests. High levels of a type of antibody, combined with typical symptoms, means lupus is likely.

You might be referred for X-rays and scans of your heart, kidney and other organs if the doctor thinks they might be affected.

Once lupus is diagnosed, you'll be advised to have regular checks and tests, such as regular blood tests to check for anaemia and urine tests to check for kidney problems.

Lupus can range from mild to severe

SeverityHow it affects the body
MildJoint and skin problems, tiredness
ModerateInflammation of other parts of the skin and body, including your lungs, heart and kidneys
SevereInflammation causing severe damage to the heart, lungs, brain or kidneys can be life threatening

Symptoms can flare up and settle down

Lupus often flares up (relapses) and symptoms become worse for a few weeks, sometimes longer.

Symptoms then settle down (remission). The reason why symptoms flare up or settle down is not known.

Some people do not notice any difference and their symptoms are constant.

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.

Versus Arthritis has more information on the treatments for lupus

Coronavirus advice

Get advice about coronavirus and lupus from Lupus UK

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.

Lupus UK has support, advice and information for people with the condition.

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.

Pregnancy and lupus

Lupus can cause complications in pregnancy.

See a doctor before trying to get pregnant to discuss the risks and so your medicine can be changed if necessary.

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

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12,046 public posts

LRA Celebrates Major Research Breakthroughs in 2019

As part of the organization’s commitment to advance lupus research and find effective and safer treatments for people living with lupus, the Lupus Research Alliance established Lupus Therapeutics.
As part of the organization’s commitment to advance lupus research and find effective and safer treatments for people living with lupus, the Lupus Research Alliance established Lupus Therapeutics.
lupus-support1Administrator
in LUpus Patients Understanding and Support

LRA Celebrates Major Research Breakthroughs in 2019

lupus.
lupus.
lupus-support1Administrator
in LUpus Patients Understanding and Support

Lupus?

(can lupus cause the same mouth symptoms?). I have noticed last year when I was in the sun a lot I had an uncontrolled itchy rash on my arms. Can high platelets also indicate lupus? I appreciate any feedback on my current blood work. Do you think I might have lupus? Thank you!
(can lupus cause the same mouth symptoms?). I have noticed last year when I was in the sun a lot I had an uncontrolled itchy rash on my arms. Can high platelets also indicate lupus? I appreciate any feedback on my current blood work. Do you think I might have lupus? Thank you!
Anniemari
in Lupus Foundation of Florida
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Lupus

Is anyone here with lupus who has had covid vaccine? what side effects did you have? Thanks
Is anyone here with lupus who has had covid vaccine? what side effects did you have? Thanks
Ionika
in LUPUS UK

Virtual Meet-Up for Parents of Children with Lupus - 6pm Thursday 11th March 2021

[u]Do you have a child with ? [/u] LUPUS UK will be hosting its first virtual meeting for the parents and carers of children and young people living with lupus from 6pm to 7pm on Thursday 11th March 2021.
[u]Do you have a child with ? [/u] LUPUS UK will be hosting its first virtual meeting for the parents and carers of children and young people living with lupus from 6pm to 7pm on Thursday 11th March 2021.
Paul_HowardAdministrator
in LUPUS UK

Medication question....

I am new to lupus. I noticed today with my Plaquenil, they are giving me folic acid pills. Is that something to do with lupus treatment?
I am new to lupus. I noticed today with my Plaquenil, they are giving me folic acid pills. Is that something to do with lupus treatment?
Willow7733
in LUPUS UK

COVID-19 vaccination

Lupus and COVID-19 Vaccination. This is a useful guide for Sweeties with or without lupus https://www.lupusuk.org.uk/covid19-vaccination/
Lupus and COVID-19 Vaccination. This is a useful guide for Sweeties with or without lupus https://www.lupusuk.org.uk/covid19-vaccination/
Shell567Sweet's Syndrome UK
in Sweet's Syndrome UK

ANA

Hi Dd I feel dreadful can you have Lupus without a positive ANA?
Hi Dd I feel dreadful can you have Lupus without a positive ANA?
Molly2012
in LUPUS UK

Antiphospholipid Antibodies

This condition can occur both in people with lupus and those without lupus. Fifty percent of people with lupus have APS.
This condition can occur both in people with lupus and those without lupus. Fifty percent of people with lupus have APS.
lupus-support1Administrator
in LUpus Patients Understanding and Support

Hey my first post

Hey is there anyone similar age to me with lupus that I could chat with Im 18 and is in the process of being tested for lupus
Hey is there anyone similar age to me with lupus that I could chat with Im 18 and is in the process of being tested for lupus
SkylerFay
in LUPUS UK

LUPUS UK Live Virtual Seminar - "Managing a Lupus Flare" - Recording Now Available

You can now watch this and our other previous seminars ("COVID-19 & Lupus" and "Lupus & Fatigue") in the "Video On Demand" section when you log-in to https://lupusuk-virtual.org.uk/ During the event Dr Griffiths helpfully discussed the COVID-19 vaccine and answered a couple of questions.
You can now watch this and our other previous seminars ("COVID-19 & Lupus" and "Lupus & Fatigue") in the "Video On Demand" section when you log-in to https://lupusuk-virtual.org.uk/ During the event Dr Griffiths helpfully discussed the COVID-19 vaccine and answered a couple of questions.
Paul_HowardAdministrator
in LUPUS UK

Lupus and Coronavirus (COVID-19) - UPDATED 17/02/2021

[/i] This means that some people with lupus who previously haven't been advised to shield may now receive a letter. We don't currently know how many people with lupus this may affect.
[/i] This means that some people with lupus who previously haven't been advised to shield may now receive a letter. We don't currently know how many people with lupus this may affect.
Paul_HowardAdministrator
in LUPUS UK

So I am in the hospital...for several blood clots on my lungs.

And because of my history with asthma and family medical history, they are thinking I have Lupus. Anyone here with Lupus and asthma? I had no idea they were connected.
And because of my history with asthma and family medical history, they are thinking I have Lupus. Anyone here with Lupus and asthma? I had no idea they were connected.
Willow7733
in Living with Asthma

Vaccine and lupus

I've found an article about lupus and vaccine. Vaccines like tetano vaccine could activate lupus disease. I don't know if it could be dangerous for my daughter take vaccine. Do you have notice about this? Thank you very much
I've found an article about lupus and vaccine. Vaccines like tetano vaccine could activate lupus disease. I don't know if it could be dangerous for my daughter take vaccine. Do you have notice about this? Thank you very much
Pabla_1234
in LUPUS UK

Lupus - how can I help myself?

Hello I’m new to this and am only just accepting my lupus after 2 years diagnosis! Can anyone recommend any great self help guides/books please. My lupus is awful atm and I need to try anything? Thank you
Hello I’m new to this and am only just accepting my lupus after 2 years diagnosis! Can anyone recommend any great self help guides/books please. My lupus is awful atm and I need to try anything? Thank you
KTC67
in LUPUS UK

Christmas cards, you can be festive and support Lupus UK

Help support the charity Lupus UK. There's still time to put in an order to Lupus UK shop. They have a lovely selection of Christmas cards https://www.lupusuk.org.uk/shop/
Help support the charity Lupus UK. There's still time to put in an order to Lupus UK shop. They have a lovely selection of Christmas cards https://www.lupusuk.org.uk/shop/
fabwheelie
in LUPUS UK

Lupus Pain

Lupus Pain. What have others experienced?
Lupus Pain. What have others experienced?
Goinglong10
in LUPUS UK

Lupus question

How do you know you have lupus?
How do you know you have lupus?
Tori331
in LUPUS UK

Lupus /vaccine

Hi everyone just asking with the covid vaccine with lupus would u be in catergory 4 or 6 thank you
Hi everyone just asking with the covid vaccine with lupus would u be in catergory 4 or 6 thank you
Hometeam2016
in LUPUS UK

Heart Involvement

Does anybody suffer with heart complications due to lupus I’m in the process of having tests ie heart scan and wondered if it is common with lupus
Does anybody suffer with heart complications due to lupus I’m in the process of having tests ie heart scan and wondered if it is common with lupus
kingsnorth
in LUPUS UK
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