Can anyone talk to me a bit about (SLE) Lupus?

[AreYouSirius]

Bit of background:
My mum was diagnosed with Lupus a couple of months ago, after years of trying to get a diagnosis of what was going on with her skin. The diagnosis came quite out of the blue but it explains a lot of her symptoms which were all being investigated and treated separately - her fatigue, joint pain, alopecia, which now when you look at them as a whole the diagnosis makes sense I guess. She also had a "mini stroke" about ten years ago which was always unexplained and it now seems like Lupus may have been the reason for that.

She's been put onto a Malaria drug (?) (it's got a really long name!) to treat her symptoms, particularly her skin rashes and reaction to sunlight. She was originally on one tablet then told to move up to two, but once on two she had an extremely horrible reaction and on doctors advice is only taking one.

Anyway, due to life being a pile of crap I've recently moved home and am living with her at the moment and sometimes she just seems so unwell that I am shocked. She was definitely as unwell before the diagnosis, but I guess now it has a name attached it just seems worse. She's also burying her head in the sand a bit, and not being good to herself which annoys me just a little bit.

I don't really know what the point of this thread was . I guess I just want more information on what it's going to be like. There's a myriad of information available on the internet but it's so overwhelming to be honest. Is it going to get worse as she gets older? She's in her early fifties now.

And I suppose, selfishly, I want to know if it's likely to be passed down genetically? I know nothings been proven, but I wondered if anybody knew of anyone who has more than one generation of Lupus in a family? I get a very similar skin rash to her.

Sorry if I'm not making much sense! I suppose I just want to hear some experiences from Lupus sufferers or family of, and maybe someone to gently tell me to calm the hell down and that a fifty year old woman can look after herself

Hi, My grandmother has lupus (misdiagnosed initially)
I believe it is genetic and affects women mainly…. out of three daughters, two have inherited it. The symptoms you described are normal to what they are experiencing. Go to your GP and request a blood test- G.p's can't refuse your request. I think you should rule it out so you don't worry yourself either!

The good news is that lupus is manageable and you can lead a normal life- please stop panicking- just support her like you are :)

Thanks orphanblack I didn't realise that GPs can't refuse your request, I'll go have a chat to them.

Years ago I used to work with someone with lupus, who was lovely. She had the drug that your Mum takes too. She found she would get flare ups and bouts of tiredness and she was not able to come in to work then, and we had a very understanding boss, so she would just call in sick, delegate as much as she could, and return when she was able to.

Strangely, even back then I felt I identified with some of her symptoms (such as the tiredness - she told me about the spoons - do you know about the spoons?) As it turns out, I don't have lupus, I have a different (more easily treatable) autoimmune disease and a susceptibility to develop more, including lupus or other autoimmune diseases. Your mum could also develop other auto immune diseases and should be getting this checked every now and then. It sounds as though her doctors will be doing that. Hard to make the effort to ask for more checks when you already have something the matter with you and you feel terrible, though. (If you want to, compare your Mum's untreated symptoms to those of rheumatoid arthritis, celiacs, thyroid disorders such as hashimotos and graves disease, Sjorgren syndrome, etc extensive list including very rare ones here ).

She needs to avoid the sun to stop her rash flaring up, so might need vitamin D supplements.

here is the NHS leaflet on Lupus

As for whether it is genetic, well that isn't really proven or disproven. There may be more than one cause, so it can be but probably isn't always. I have various relatives with various auto-immune diseases, but it doesn't follow an obvious pattern in our family. Go and get a screening for auto immune diseases (not just lupus) and say you get the skin rash, and mention any other symptoms.