o/t what can you tell me about lupus?

[dutchgirl]

My SIL was just diagnosed and she is kind of scared. does anyone have first-hand experience? Thanks in advance.

[AmyA]

My mom has it. Sometimes it is wrongly diagnosed when they know it's connective tissue related but they aren't sure. Anyway my mom has a lot of joint pain, - shoulders, elbows, feet, neck. She also gets very tired and she said she gets sick more easily. She takes Neurontin for pain. How old is your SIL?

[DDVMM]

No first hand experience, just wanted to send your SIL some positive thoughts and . I have read and agree with Amy that it is sometimes hard to diagnose correctly.

[dutchgirl]

My mom has it. Sometimes it is wrongly diagnosed when they know it's connective tissue related but they aren't sure. Anyway my mom has a lot of joint pain, - shoulders, elbows, feet, neck. She also gets very tired and she said she gets sick more easily. She takes Neurontin for pain. How old is your SIL?

Thanks Amy. She is 41. We don't really know a lot about it and from what I gave read there is great variation. Thanks for sharing your info

[Magpie]

When I was around 41 or 42 I thought I had it. The rheumotlogist said that even if I did, at my age it would not be a life-threatening form of it.

Here is a website that might help her, as it is a support board forum and there is a board on there for lupus:

http://brain.hastypastry.net/forums/index.php

[deanne]

I have lupus. I have a mild case. Everyone is different. I have premature menopause, migraines, inflamatory arthritis in my feet and hands. I do have some funky antibodies floating around. My thyroid is mildly effect.

My friend has it and she almost died. It just depends on what type of tissue/organ involvement she has.

Deanne

I also have problems with fatigue, a fuzzy brain especially when I get tired. I get stressed very easily, and I'm very disorganized.

[MaggieM]

I was diagnosed with lupus (SLE) early last year. My symptoms at that stage were acute joint pain and swelling of the joints. I MUST take my medication consistently and skipping one day usually results in some joint pain and headaches.

Please tell your SIL that there is hope after diagnosis. Most articles on the internet will scare you with extreme cases of people becoming invalids or not being able to function normally. Although this can happen, it does not happen to everyone, and I haven't found a forum for those who are coping and getting on with life. With correct treatment life will carry on, though not always as smoothly as we'd like.

It is very important to find a doctor that specialises in auto-immune diseases. The treatment I am on is called "disease arresting therapy", which means that altough the damage that was done prior to diagnosis can't be undone, if I take the meds, there will be no progression of the disease.

Looking back, I must be honest and tell you that depression goes hand-in-hand with the overwhelming exhaustion that is one of the symptoms of lupus.
It was a really scary and frustrating time.

Please feel free to PM me if you want further info.

Hope this helps.

MaggieM

[LostAngel212]

thoughts going out to your sil

[Louisette]

Does your SIL have SLE or Discoid Lupus (which only affects the skin?) I have had SLE (whole body involved) since diagnosis in '99. The diagnosis has been life altering. I have been hospitalized at least once per year since my diagnosis.

I started on high dose steroids when I was diagnosed. I contintue to take them but in much lower doses. I also take medication for joint pain which can be debilitating at times but all in all, I deal with it on a daily basis because I really have no other choice.

There are lots of things on the net about SLE that will scare the #$%^ out of you but if you have a clinician that is well informed about the disease, and you see him often she should do OK.

My sister also has SLE but she has a very mild form of it and is on no medication, just her lab work is a little wacky.

Good luck to your SIL!

[TRSBM]