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Original poster

Anyone have experience of the illness lupus?

50 replies

PuffTheMagicDragon · 19/11/2004 22:55

My sister has been very unwell recently and was rushed back in to hospital today for the second time in a week.

I found out about 7.30pm and have just come back from visiting her. She has been diagnosed with lupus.

I have looked on the web and have a bit more of a grasp eg its a chronic autoimmune disease, but I'm worried because she's my baby sister (age 30!) and I'm not sure what it means for her in the long term. I know no cure has been discovered as yet.

She had a miscarriage recently and I'm just so upset for her - more sh*t to deal with.

Any insight/experience gratefully received.

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ChicPea · 19/11/2004 22:57

Sorry to read about your sister Puff. I think lupus is very debilatating (sp?). Having said, women can still have children although they do need lots of rest. Can you find further info on the internet?

Original poster
PuffTheMagicDragon · 19/11/2004 23:00

I'm trawling through it at the moment chicpea. Some of the stuff I read I think "ok", other stuff is frightening. I'm very protective of her since Mum died. We've been through a lot together.

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ChicPea · 19/11/2004 23:05

I am so sorry to read that. I really don't know much about it except that I know of two clients who had lupus who hired a Maternity Nurse through me and in both cases it was their second baby, they needed alot of rest after the birth. But how fabulous that they could still have a baby.

pixiefish · 19/11/2004 23:06

There's a lad that works occasionally for my dad who's wife has lupus. They have 3 kids and he can't work all the time because when she's bad he has to be at home to look after the youngest.

I know that she's had this for years and gets very tired with it. sorry but I can't help anymore than that

Original poster
PuffTheMagicDragon · 19/11/2004 23:08

Thanks for posting what you know ChicPea. Anything is comforting and helpful at the mo.

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Original poster
PuffTheMagicDragon · 19/11/2004 23:10

Thanks pixiefish, its helpful just trying to put it into a real life context IYSWIM.

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ChicPea · 19/11/2004 23:20

There must be some sort of support group for people with lupus and their families. I think the main symptom is fatigue.

OldieMum · 19/11/2004 23:23

My cousin's ex-wife has it. It can be very debilitating, as others have said. She has cycles of improvement and relapse, but I'm afraid I don't know much more than that.

gingernut · 19/11/2004 23:54

Sorry to hear this Puff. I had a look on the Patient UK website and searched under lupus and came up with a list of information leaflets and web links, some of which you may have already seen. There are some links to sites for Patients' support groups on there. Sorry but I can't get the link to the page itself to work so have just put a link to the home page. (I usually find this site to be a reliable source of information). HTH.

MarsLady · 19/11/2004 23:58

Puff, my sister's best friend has lupus. Will talk to her in the am and find out a bit more about it for you. She has had lupus for years. She's very active, travels alot and parties too. She has her down days, weeks etc. Hugs to you both. Will post again tomorrow when I know more. Maybe I can put the two of them in touch. However, best talk to my sister's friend first.

Original poster
PuffTheMagicDragon · 19/11/2004 23:59

Thanks for those gingernut.

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Original poster
PuffTheMagicDragon · 20/11/2004 00:00

MarsLady - that would be so helpful. Thankyou .

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Dingle · 20/11/2004 00:19

My mum has lupus Puff. She has been diagnose for about 3 years now I think. Her health was really bad at that time, her kidneys failed and she was on dialysis 3 times a week. I don't really know if this was a connection with the lupus, it hadn't been diagnosed at the time. But through medication she slowly but surely cut down on dialysis and now only needs to be check over ever now and then. My mum also had quite a bad rash with it, but again that too has settled down. I will try to find out more, but I am sure there will be more relevant information to your sister on the net. I'm sorry to hear that she is going through such a bad time, give her hugs and support-with that life will always seem so much better. Love Dingle.

Original poster
PuffTheMagicDragon · 20/11/2004 00:26

Thank you Dingle. Any info would be great. Your Mum has been through the mill. Glad things have settled down for her.

I am so grateful to you all for posting.

Things feel tough at the moment - anniversary of Mum's suicide next week and then this news about my sis. I love her to bits and would do anything for her.

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Dingle · 20/11/2004 00:35

Oh Puff, I'm so sorry.
Nearly lost my my due to the illness, she's had thrombosis(sp?) for years and was taken off of the blood thinners for dialysis, after coping with all the lupus & kidney problems she had a massive heart attack & was resussitated in A & E a while afterwards. I am so lucky that she was strong enough to pull through. I was pregnant with dd at the time and she has always said that she had to pull through to see her only granddaughter! I had told her that I was having a girl. When my dd was born with Downs Syndrome it made it all seem more like fate! She was meant to see her and dd was meant to be "special."
Sorry to waffle, had a rather emotional day and your news has just made it even more so.
You have each other. Hugs to you both.

Original poster
PuffTheMagicDragon · 20/11/2004 00:46

Dingle, I'm in tears now and tbh honest I needed to let it out.

There are some nights on mumsnet when you need some friends to lean on. This is one of 'em!

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Dingle · 20/11/2004 00:50

So sorry Puff I didn't mean to upset you further, that was the last thing I intended. I 'm no help at all, just a tearful mess myself tonight.
SO SORRY.

MarsLady · 20/11/2004 00:50

Lean as long as you like Puff.

Original poster
PuffTheMagicDragon · 20/11/2004 00:56

Dingle, you haven't upset me further at all, I needed a cry, it's been welling up for hours. The worst thing to do is try to hold it all in a la "stiff upper lip"!

MarsLady

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Dingle · 20/11/2004 01:09

Yes Puff, you're right. I've had an awful week- had my nan's funeral Wednesday, DH's nan's today. Sat down tonight all "toghether" tried to get my act together & make some Xmas cards while watching Children in Need! Really bad move! I had so many tears in my eyes-couldn't see the TV, not to mention the stupid cards!
You and your problems, was just the "icing on the cake" IYSWIM.
You are so right about MN and the support the give, sorry I have made you cry, but I do hope that things will seem clearer and that after a good nights sleep you can be stronger knowing that we are all behind you!
The only thing is I hate these virtual hugs!
Don't compare at al to the real thing.

Original poster
PuffTheMagicDragon · 20/11/2004 01:16

Know what you mean Dingle. What a week you've had. Thank you for being around tonight. I really appreciate it xxx.

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Dingle · 20/11/2004 01:20

That's no problem Puff but I've hardly been the strong shoulder to cry on have I!Must go now Puff. I feel so drained after this awful week.
I will try to find out some info for you tomorrow.
Take care & I get back to you when I can.
Hugs....dingle.

Original poster
PuffTheMagicDragon · 20/11/2004 01:27

Night night xx.

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Original poster
PuffTheMagicDragon · 20/11/2004 02:53

One of those websites is particularly useful gingernut, it talks lupus in plainspeak.

I'm trying to be positive about all this but admit I'm struggling.

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Original poster
PuffTheMagicDragon · 20/11/2004 09:31

just bumping this in case anyone else has any experiences to offer.

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