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Lupus: Does anyone have it or know anyone with it?

(9 Posts)
Grockle Fri 14-Dec-12 01:35:28

Thanks piprabbit, your post is so helpful and very reassuring. I had a quick look at the Lupus UK site and it seems to have lots of information.

I'm at the stage now of just wanting a diagnosis. I've been too ill for too long to keep taking time off work for being tired/ achey etc!

Korma, I have had quite a bit of time off work too. I've gone back now but am struggling (I'm a teacher). DP acts as my carer so mine is the only income so there's a lot of pressure for me to carry on... I don't get DLA. My mobility is poor too. I walk with a stick outside or clutch to walls inside. I crawl up the stairs to bed and on bad days, use a wheelchair. It's miserable!

Look after yourself.

Thanks grockle. Things are really bad at the moment, am off sick from work and have zero money which isn't helping me feel better
Am in constant pain and my mobility is very poor

Thanks for link to thread, ill gave a good read
When I've got the energy lol

piprabbit Fri 14-Dec-12 01:19:16

Hi - I have Lupus (SLE). It's a PITA to diagnose, I'm sorry that you've been ill and left to worry.

I was diagnosed about 16 years ago but have been in remission since diagnosis and haven't needed any medication for the last twelve years or so. I was really ill and struggling before I was diagnosed, but with effective treatment it was fairly quickly under control and I started to feel better. Since then I have had two children - which probably explains my current feeling of exhaustion better than the Lupus.

Much of the information is really vague because Lupus can affect almost any organ in the body - so everyone is slightly different. Have you found the Lupus UK website yet? They have lots of useful information.

There are lots of sites about Lupus in the USA - a word of warning to tread gently at first. I found it very worrying to read about other people's experiences. I also found that some of the older books (available in libraries etc.) were very pessimistic about long term prognosis - I'm glad to say that I later found out that they were really out of date and new treatments have improved outcomes hugely in the last 25 years.

Good luck, I hope you get some answers and some treatment very soon - and feel free to PM me if you would like to.

Grockle Fri 14-Dec-12 01:15:05

Oh Korma, sorry sad

It's taken me over a year to get this far with tests & diagnoses. I hope your appointment goes well.

There's a few of us on a thread here... not about Lupus, but ME/ CFS/ Fibro etc which are similar (and what the thought I had til now). If you need some support or a place to vent, come and join us smile

Will follow this grockle as my doctor mentioned this just this week
Am seeing rheumatologist in 2 weeks so will await further tests

Grockle Fri 14-Dec-12 01:04:13

Thanks for the stories... it's reassuring to know that it can be ok. I'm very glad to know that. It helps knowing people who have experience of it.

chipstick10 Thu 13-Dec-12 23:37:47

I know someone with it, she is an older lady already in her late 60's. she does get very very tired and has to have vitamin d injections as she can't absorb it properly because of the lupus. She sometimes has steroid injections also. Apart from feeling tired, she's happy and well.

Clumsasaurus Thu 13-Dec-12 20:02:12

I know 2 people with it. Both super active once it was controlled, happy and generally healthy people too.

I hope you get the answers you need from the drs

Grockle Thu 13-Dec-12 16:32:49

I've been ill on & off for a while & had millions of tests. I was told it was likely to be Fibromyalgia/ Chronic Fatigue but today my consultant said he thinks it is Lupus. I need more blood tests & an MRI & go back in the new year. I don't know anything about Lupus - I've googled but everything seems a bit vague. Just wondered if anyone can tell me anything about it from personal experience.

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