Okay, so my girlfriend has lupus.

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Her friend just told me that she's been admitted back into the hospital for more tests. She's been going to the doctor because a nerve in her leg shut down last week. She's already been diagnosed with Raynaud's phenomenon and was diagnosed earlier today with scleroderma. From what I've heard, lupus is pretty serious. I am terrified and feel very, very sick.

Does anyone know anything about lupus? Is it really serious? She's going to be okay, right?

― Curt1s St3ph3ns, Thursday, 12 February 2004 02:33 (twenty-two years ago)

"big hug 4 u both"sorry i dont know what to say

― Emma williams (Emma williams), Thursday, 12 February 2004 02:35 (twenty-two years ago)

my sincere sympathies :-(

― Eisbär (llamasfur), Thursday, 12 February 2004 02:37 (twenty-two years ago)

Oh gosh. *many good thoughts* I've always heard pretty unsettling things, but let's see what resources are out there...

― Ned Raggett (Ned), Thursday, 12 February 2004 02:40 (twenty-two years ago)

Okay, go here for starters:

http://www.lupus.org/

There is a link to support groups here:

http://www.lupus.org/support/groups.html

And here is a basic overview:

http://www.lupus.org/education/overview.html

― Ned Raggett (Ned), Thursday, 12 February 2004 02:41 (twenty-two years ago)

My mom has lupus. It's currently under control with steroidal medication. The depression seems to be the worst part of it. Your girlfriend's gonna need lots of love and support more than anything (kinda goes without saying I guess). Email me if you want Curt1s.

― Bryan (Bryan), Thursday, 12 February 2004 02:44 (twenty-two years ago)

Good luck, CS; it might be a hard road for a little while. I've been through this with my wife (not lupus though), and all you can do is be there for her.

― Begs2Differ (Begs2Differ), Thursday, 12 February 2004 02:49 (twenty-two years ago)

Thanks guys.. and thanks Ned for the site. Am reading.

― Curt1s St3ph3ns, Thursday, 12 February 2004 02:58 (twenty-two years ago)

One thing possibly worth noting: getting a second opion. I know now of two people who were diagnosed with lupus and have, after much angst and pain, found out it wasnt lupus at all.

Best wishes for the best of medical care and recovery!

― Trayce (trayce), Thursday, 12 February 2004 03:01 (twenty-two years ago)

Trayce OTM. Definitely get a second opinion before she's put on any of the heavier steroids as they can be pretty toxic.

― Bryan (Bryan), Thursday, 12 February 2004 03:02 (twenty-two years ago)

googling for stem cell and lupus I got lot of material like:

"Stem Cell Transplant Operation Cures Lupus"
http://www.china.org.cn/english/MATERIAL/26086.htm

"Complete Remission of Refractory Systemic Lupus Erythematosus With High-Dose Chemotherapy and Stem Cell Transplantation"
http://www.uklupus.co.uk/news30.html

"Re: Stem cell transplant success rate?"

― Sébastien Chikara (Sébastien Chikara), Thursday, 12 February 2004 03:05 (twenty-two years ago)

It's good to know that, Sebastien, and I'm sure Curtis will learn more -- but right now he needs to know the basics and build from there. His questions say as much.

― Ned Raggett (Ned), Thursday, 12 February 2004 03:07 (twenty-two years ago)

Oh gosh, Curtis, I'm terribly sorry to hear about this.

Just continue to be there for your girlfriend, ok? Try to help her out, even if it's just helping to cheer her up. I do suppose there could be a chance that this is a misdiagnosis, but in the event that it isn't, I know you're in good hands on this place as there are bound to be experts on this condition around here (as a sampling is already evidenced).

Take care, you two.

― Mellow Dee (Dee the Lurker), Thursday, 12 February 2004 03:10 (twenty-two years ago)

best wishes.

― RJG (RJG), Thursday, 12 February 2004 03:13 (twenty-two years ago)

Autoimmune conditions are really tough. As people have said, read up on it, be supportive. It's got to be scary for her right now. Adjusting to a major diagnosis generally is.

― JuliaA (j_bdules), Thursday, 12 February 2004 04:10 (twenty-two years ago)

my mother has it as did an aunt who has passed.

she manages pretty well with steriods but has had some joint deformation.

some people have more trouble than others but it is possible to live well with the disease.

― Viva La Sam (thatgirl), Thursday, 12 February 2004 04:40 (twenty-two years ago)

A good friend has it and he's fine. He gets sore when it's cold, but otherwise has it pretty well under control - he works out like a maniac, though I'm not sure that has to do with anything.

― Spencer Chow (spencermfi), Thursday, 12 February 2004 05:27 (twenty-two years ago)

Because of this thread I just learned all about Lupus--what a drag, boy.
From what I read it seems like most of the time it's extremely unpleasant rather than overtly threatening in most cases---this I'm sure is no consolation. But I've had a bunch of friends and close family in my life who have suffered from chronic/cureless pain disorders, which is what the harsh stages of Lupus sound like, and the only advice I can give from my experience is that the best thing other people can do is make sure the ill/beloved party knows there are valuable things in the world--things worth focusing on and fighting for. Like, y'know, people who love them, or their own ambitions, or a good movie coming out soon, or whatevs. You just need to make them be aware they're normal and carry on doing the things they love, and keep them from focusing on their own pain. You're hanging out with her, right? So there you go. Mucho happy, siempre.
I don't mean to be dire at all, but I know that people of the introspective type tend to be focused inward at times like this, and I know that's not the way to be. Everyone knows love is the thing that makes life worth enduring--so struggle or no, continue to love and support your lady and it should follow that all is fine and you shouldn't worry.

― antexit (antexit), Thursday, 12 February 2004 09:05 (twenty-two years ago)

being a girl who has autoimmune (thyroid, allergy) problems AND had a bone tumor, all i can say is try to understand when she doesn't feel well. don't treat her like she's an inconvenience and a drag when she doesn't feel well. it is devastating to feel like your s.o. only liked you when you were no trouble, and had no problems. consistency is really key. remember that you love *her* and life has sickness as well as health.

― Orbit (Orbit), Thursday, 12 February 2004 09:09 (twenty-two years ago)

Love and good thoughts to you two.

― Speedy Gonzalas (Speedy Gonzalas), Thursday, 12 February 2004 09:10 (twenty-two years ago)

two weeks pass...

I've just been told I probably have lupus. I feel weird. What a way to start a Friday evening.

― Cathy (Cathy), Friday, 27 February 2004 19:19 (twenty-two years ago)

Oh dear. :-( Has it been something bothering you for a while? *good thoughts*

― Ned Raggett (Ned), Friday, 27 February 2004 19:21 (twenty-two years ago)

Thanks Ned.
No, it's totally out of the blue. I had blood tests in January, forgot all about them and then about half an hour ago I got a call saying they think I have lupus, which I'd never heard of. I haven't experienced any major symptoms or anything...I thought I was fine. It's just very confusing.

― Cathy (Cathy), Friday, 27 February 2004 19:26 (twenty-two years ago)

The best part about lupus is watching yourself turn into a walking rash in the sun.
At least, that's my favorite part.
(Sorry to be flip... I've had it for a while and it's like the Chinese water torture of diseases...)

― Melissa W (Melissa W), Friday, 27 February 2004 19:27 (twenty-two years ago)

Hang in there!! xx

― Jeanne Fury (Jeanne Fury), Friday, 27 February 2004 19:29 (twenty-two years ago)

woah. take care, cathy! I don't know what lupus is but still -.

― cozen (Cozen), Friday, 27 February 2004 19:31 (twenty-two years ago)

I'm sorry, autoimmune conditions can be really rough. But the good thing is that now that you've been diagnosed, treatment can begin and you can start feeling better. I hope that doesn't come off as a platitude, I was diagnosed with a chronic condition late last year and am feeling a lot better now that I am getting treated for it.

― El Diablo Robotico (Nicole), Friday, 27 February 2004 19:31 (twenty-two years ago)

Thanks everyone.
I've not been properly diagnosed yet...suppose that'll happen over the next few weeks. They said it's not *that* serious. The name makes it sounds like rabies or leprosy or something.

― Cathy (Cathy), Friday, 27 February 2004 19:41 (twenty-two years ago)

Coming to NPL tonight cozen?

― Cathy (Cathy), Friday, 27 February 2004 19:43 (twenty-two years ago)

I always think of lycanthropy.

― Jordan (Jordan), Friday, 27 February 2004 19:43 (twenty-two years ago)

yeah, I thought you were turning into a wolf! or morrisey's best friend, linder (/obscure 80s reference).

I would come but I'm at home till tomorrow. is anything happening tomorrow night? I'm sure RJG will let me know.

― cozen (Cozen), Friday, 27 February 2004 19:45 (twenty-two years ago)

Lycanthropy would be *cool*.

Don't know of anything tomorrow night...I'm probably staying in.

― Cathy (Cathy), Friday, 27 February 2004 19:47 (twenty-two years ago)

full moon?

(sorry sorry)

― cozen (Cozen), Friday, 27 February 2004 19:49 (twenty-two years ago)

― Cathy (Cathy), Friday, 27 February 2004 19:52 (twenty-two years ago)

I don't mean to denigrate lupus w. my joking btw. so yeah as I said, take care. I'm just reading about lupus now and it doesn't sound too nice.

― cozen (Cozen), Friday, 27 February 2004 19:58 (twenty-two years ago)

You should take advantage of the general lack of information regarding lupus and tell people that shapeshifting is a primary side effect when they ask.

(x-post - me too)

― Jordan (Jordan), Friday, 27 February 2004 20:00 (twenty-two years ago)

Hehe. I will do that.

― Cathy (Cathy), Friday, 27 February 2004 20:04 (twenty-two years ago)

O dear, sorry to hear that. I'm glad it's not that serious, but it dosn't sound at all pleasant anyway.

― cis (cis), Friday, 27 February 2004 20:13 (twenty-two years ago)

Hi cis. Thanks for the email, I'm going to write you a letter and send off your CD sometime this week. You'll like it, it's good.

― Cathy (Cathy), Friday, 27 February 2004 20:25 (twenty-two years ago)

Am sure I will; and yay letters!. (Sorry I took such a long time to reply, by the way.)

― cis (cis), Friday, 27 February 2004 20:29 (twenty-two years ago)

(I'm worse, I took four months!)

― Cathy (Cathy), Friday, 27 February 2004 20:34 (twenty-two years ago)

A good source for reliable lupus info is the National Institute for Arthritis, Musculoskeletal and Skin Diseases (part of the U.S. National Institutes of Health). There is some sketchy info out there so consider checking out the NIAMS web site. MEDLINEplus is also a good place to look.

― quincie, Friday, 27 February 2004 21:40 (twenty-two years ago)

all joking aside, why is Lupus named after the latin for wolf?

― DV (dirtyvicar), Friday, 27 February 2004 21:43 (twenty-two years ago)

because it is a woman's disease (!!!)

― dean! (deangulberry), Friday, 27 February 2004 22:22 (twenty-two years ago)

*someeeeebody needs a cockkkpunchhhh*

― luna (luna.c), Friday, 27 February 2004 22:53 (twenty-two years ago)

I blame 'Ginger Snaps,' myself.

― dean! (deangulberry), Friday, 27 February 2004 22:55 (twenty-two years ago)

But seriously, wasn't it Lupus that that girl from the Seattle Real World had? Irene. She was the one that got slapped by Steven/Stephen when she was leaving the show.

― dean! (deangulberry), Friday, 27 February 2004 22:56 (twenty-two years ago)

I remember that. wotta dick.

― cozen (Cozen), Friday, 27 February 2004 22:58 (twenty-two years ago)

But seriously, wasn't it Lupus that that girl from the Seattle Real World had?

Irene had Lyme disease.

― El Diablo Robotico (Nicole), Friday, 27 February 2004 23:04 (twenty-two years ago)

http://www.spitfiretour.org/images/mcgee.jpg lyme disease. not lupus.

― dean! (deangulberry), Friday, 27 February 2004 23:04 (twenty-two years ago)

right, yeah. xpost and what not.

― dean! (deangulberry), Friday, 27 February 2004 23:04 (twenty-two years ago)

Oooh.

― DV (dirtyvicar), Saturday, 28 February 2004 19:50 (twenty-two years ago)

nine years pass...

an xpost of 9 years: its called lupus because people used to think it was caused by wolf bites because of the way the rashes heal - formthe inside out, leaving a ring that kind of looks like a dog bite.

anyway, i might have lupus? i probably have lupus? my doctor thinks it is the most likely explanation for my symptoms and the results of my (extensive) bloodwork. i have to have a lot more over the next x months. does anyone currently posting here have it? i have many questions.

― 1 P.3. Eternal (roxymuzak), Thursday, 24 October 2013 02:55 (twelve years ago)

sorry for typing like a drunken macaque.

― 1 P.3. Eternal (roxymuzak), Thursday, 24 October 2013 02:57 (twelve years ago)

i have a close relation with lupus. stay strong, roxy, diagnosis takes quite a bit of time, and even with a positive diagnosis the symptoms vary a great deal.

― oh shit you psyched yourself into liking mbv (Hunt3r), Thursday, 24 October 2013 03:15 (twelve years ago)

is it MCTD? they originally thought i had rheumatoid or MCTD, now leaning more toward lupus as i get more results.

― 1 P.3. Eternal (roxymuzak), Thursday, 24 October 2013 03:18 (twelve years ago)

seven months pass...

the scariest thing i have ever read

http://www.lupusny.org/about-lupus/fight-lupus-body-and-mind/thinking-memory-and-behavior

― 1 P.3. Eternal (roxymuzak), Saturday, 21 June 2014 22:58 (eleven years ago)

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