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Original poster

Can anyone talk to me about Lupus?

14 replies

cocolepew · 28/09/2013 17:30

I possible have this. The dr has sent off blood tests and I have to go back in six weeks, he said that even if it's negitive I could still have Lupus?
I do have quite a few symptoms that point to Lupus but I'm trying not to Google so I can avoid the horror stories

OP posts:

Original poster

cocolepew · 28/09/2013 18:52

Needy bump.

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impatienttobemummy · 28/09/2013 18:54

I know someone who has this and it hasn't stopped her working or living a normal life but sorry I don't have details

MrsCakesPremonition · 28/09/2013 19:00

Hi cocolepew - sorry you are having to hang around for diagnosis, especially when Lupus is such a notorious PITA to diagnose.

I was diagnosed back in 1998 and back then some of the information was positively prehistoric, especially about life expectancy and stuff. I scared myself silly - so I understand why you don't want to google. However, things have improved massively over the last few years in terms of managing and treating Lupus, the medicines are much more effective.

Lupus UK is the national charity which supports people with Lupus - their website is very good, so it might be worth looking at.

FWIW, I have been in remission from Lupus for a decade and have had two lovely children in that time. Getting the right treatment made all the difference, but I know every person's experience of Lupus is different.

Was there anything in particular you wanted to know (not that I'm an expert or anything)?

BopsX3 · 28/09/2013 19:04

Just marking my place. I'm also going through tests for lupus. I'm under rheumatology at the moment and have an appointment coming up for yet more tests :( been going through tests for about 18 months now

Original poster

cocolepew · 28/09/2013 19:15

Thanks for your replies

MrsCakes it was the life expectancy thing that freaked me out! I read that 70% live for 20 years after diagnosis and 90% live for 5 years.

I'm glad to hear that you're in remission I'm past having children in fact I think it was having a hysterectomy that had caused this.

I hate sitting telling the Dr my symptoms in case they think maybe I've Googled them and I'm making it up .

Next time I go back In going to write somethings down. I was asked if I've ever had pleurisy and said no because I thought you got it after a cold/chest infection. After looking it up I realised I probably had, just over a year ago. I had such a bad pain in my ribs and chest I DH thought it was my heart and phoned an ambulance.

The dr in A&E told me it was a virus, she knew this by standing at the end of the bed and not coming near me .

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Original poster

cocolepew · 28/09/2013 19:16

18 months!? Just for Lupus or are they eliminating other things?

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MrsCakesPremonition · 28/09/2013 19:29

Lists for the doctors are good .
Have you need referred to a consultant yet, or is it still your GP organising the tests?
Lupus symptoms are so vague - some of the 'indicators' aren't even properly documented as being symptoms of Lupus, for example I have always had massive reactions to insect bites, never cropped up as a Lupus symptom but once I started reading the forums I realised that it was something that is fairly common among sufferers.
I think you should just write everything down and hand it to your doctor for them to pick their way through. Even if it isn't Lupus that you have, there are a host of related autoimmune diseases with similar ranges of symptoms.

BopsX3 · 28/09/2013 19:35

Yeh think they're trying to eliminate things aswell. Plus, I was pregnant when the GP told me that's what he thought I had.

I've so far been diagnosed with anti phospholipid syndrome (sticky blood) but not a lupus diagnosis yet. Though apparently lupus and sticky blood can be connected? I'm high risk for blood clots too so had to have injections every day of my pregnancy.

Just out of interest, what are your symptoms? I'm not sure my GP is on the right track with me to be honest

Some of my symptoms sound like lupus and some I'm not sure of.

Also, there's 2 types of lupus isn't there? Where you told the same?

Original poster

cocolepew · 28/09/2013 19:58

There is so many things that are so similar

I originally went to my Dr thinking i had an under active thyroid, I was very fatigued, hair thinning, weight gain, aches and pains. It was ruled out and she thought it might be fibromyalgia.

I saw the rhematologist last week and after hearing some of my other symptons he started to ask questions that lead towards Lupus.

I was off work n the Summer but didn't feel any better during in the sun. I had rashes from it. Im getting

mouth ulcers, pains in my hands and feet, headaches, visual disturbance, muscle pain and numb fingertips.

I had a rash on my face that my gp said was impetigo but I wasn't convinced. It got very close to my eye and he sent me to A&E who didn't know what it was so gave me antibiotics .

I looked at pictures of the Lupus butterfly rash and it looks just like what I had. I also had the disc rash in my fingers.

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Original poster

cocolepew · 28/09/2013 19:59

It is SLE I'm being tested for.

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BopsX3 · 28/09/2013 20:08

I get migraines, joint aches (bit like when you have the flu), very stiff mainly in the mornings but carries on throughout the day, sudden tiredness that I can't shake, numb fingers and toes, rashes that are all different (some like blisters others similar to excema) chest pain and pain in my lower left back

Not sure which one I'm being tested for

It all came about as I went to the GP with migraines. I've been worried about them for years as my mum died from a blood clot that had got into her brain and shed been having migraines similar to mine. He asked if I had x,x and x symptoms, I said yes to pretty much all of them. He took different blood tests every week for 6 weeks and they all came back 'abnormal'. Next thing I know I was being booked in for rheumatology and haemeotology and the GP kept mentioning lupus

It's very confusing!

BopsX3 · 28/09/2013 20:10

I don't get the butterfly rash, but I do get the rash on my hands, wrists and legs

MrsCakesPremonition · 28/09/2013 20:12

BopsX3, I suspect you are being tested for SLE with your impressive set of symptoms.

The other sort is discoid lupus - which is basically the rashes without the rest of the SLE symptoms.

fortyplus · 28/09/2013 20:16

My friend's mum had Lupus for years and years. Unfortunately for her it took a long time to get diagnosed - with the glorious benefit of hindsight she'd been having symptoms for about 25 years before anyone realised that anything was wrong. She lived another 15 or so years after that and died when she was 70. If only she'd had the right treatment years before.

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