Have I got Lupus

[Rachel-46]

Hi Guys

I have been having tests done as i have been suffering from pain for over a year now. Yesterday the doc said the Lupus test has come back positive. He gave me a steroid injection and said that will help for the next 6-8 weeks till i go back to see him. I'm confused, have I got Lupus?

[Penguintaz]

Welcome to our forum Rachel

I'm glad the doctors are looking into what may be causing your pain however there is NOT one test for lupus and instead a doctor looks at your case history. You should meet four out of eleven of the symptoms, these include joint pain, fatigue, ulcers in mouth and nose, raynaurds ect. Also your bloods should show some evidence of autoimmune activity. Here is a link to the lupus UK page on how things are diagnosed: lupusuk.org.uk/diagnosis/

Lupus can only be diagnosed by a rheumatologist and not your GP. Have you been booked to see one?

Keep track of your symptoms going forward and ask if you have been officially diagnosed yet, I hope you do feel better soon.

Lupus or not this forum is here.

[Rachel-46 in reply to Penguintaz]

Hi and thanks for the reply. It was a rheumatologist I seen because I've been experiencing lots of pain in my hands, legs and feet for a long time, as well as extreme fatigue and a rash just below my elbows that looks like psoriasis.

thank you for your support

[Penguintaz in reply to Rachel-46]

Then you probably do have it but don't be afraid to contact them again, the Rheumy should of left a way for you to do so!

Fingers crossed that steroid injection helps 🤞Are you on anything else? Most common drugs for Lupus are steroids

[Krazykat26]

Hi Rachel welcome to the group

There are so many autoimmune disorders I have found out n lupus is one of them..however all of the peeps who have lupus all have varying symptoms!! It's very confusing at the best of times!! I would suggest that u have a look at lupusuk website or even give them a call..they r always very helpful!!

U have had the steroid injection and your rheumy will see how u respond to that..lupus is tricky to 'control' so often doctors try something to see the response in the patient.

U have come onto this forum n your in the right place..there's lots of interesting conversations n u will learn alot about lupus and other conditions..we have a giggle sometimes and it's great to know that your not alone..there's loads of us!!

Before I go I'll just say that steroids can have side effects n if u haven't had them before those side effects can be a bit tricky..I'm talking about mood mainly..when I first went onto them in 2013 I became very emotional..from sad, tearfulness to downright angry!! 😢😠So if u feel any of that u haven't gone crazy it's just the meds xx

[Rachel-46 in reply to Krazykat26]

Thank you for the lovely reply, I am a emotional person at the best of times god help me if the steroid injection makes it worse.

[Chanpreet_Walia LUPUS UK]

Hi Rachel-46,

Welcome to the LUPUS UK HealthUnlocked community, we offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

It seems as though your doctor is taking the correct steps to identify the cause of your symptoms, you may receive an official diagnosis at your next appointment. As Penguintaz has mentioned, there are certain criteria and tests that need to be met in order to make a diagnosis of lupus. Take a look at our blog article discussing diagnosis here lupusuk.org.uk/getting-diag...

To understand how lupus can be treated with medication, read our factsheet at lupusuk.org.uk/wp-content/u...

Our blog article on 'pain management' can be read at lupusuk.org.uk/pain-managem...

Please let us know how you get on, wishing you all the best.

[Rachel-46 in reply to Chanpreet_Walia]

Thank you for your reply and advice, its much appreciated. I must say since having the steroid injection the pain has reduced. I am a bit worried about the side effects especially the moods as I am quite emotional anyway. The fatigue is the big factor I am just so tired all the time but really struggle getting to sleep at night. I work different shift patterns so I am going to try and go swimming a few times a week and see if that helps with getting to sleep. I am also concerned about the steroid injections, could that be long term?

thank you

[Chanpreet_Walia LUPUS UK in reply to Rachel-46]

Hi Rachel-46,

You're welcome.

According to The Lupus Encyclopedia, steroid injections are usually not given more than four times a year. It is dependent on the symptoms of the person receiving the injection as to how long this can go on for.

We published a blog article on 'managing fatigue' which you can read at lupusuk.org.uk/managing-fat...

If you feel that you have a problem sleeping, you can take a sleep-assessment test via the NHS website. The website provides helpful tips and information on how to manage sleep patterns better - nhs.uk/conditions/insomnia/

Best wishes.