Lupus?

[LindaL]

My GF has Lupus (diagnosed recently) and I would like to know more about it from others who have it. Meds available, side effects, symptoms, etc....anything you can tell me would be appreciated...thanks!

 

[Ashley]

Internet search should tell you a lot.

 

[Horsefeathers]

My grandmother that we're currently staying with has it... I'm not sure the meds she's on, but she'd probably be happy to answer some questions you may have... You can PM me if you'd like... I do know it flairs up the worst when she is stressed or been in the sun too long and such....

Chris

 

[Gini]

My 24 yr old Granddaughter was diagnosed with systemic lupus 3 years ago. I would be happy

to help. pm me if you would like to talk..

 

[Sunny]

Yes, do a google search on Lupus as there are many different forms or types of it. My mother had it for years but it really only affected her skin, and even that wasn't too bad. The mother of a friend of mine many years ago had it so bad she was unable to walk and spent much of her time "scooting" around on the kitchen floor when she wasn't in her wheelchair. A friend of my stepmother had Lupus for all the 40 years I knew her and who knows how long before that. She was bedridden most of the time, but died last year at the age of 80. And most recently, a friend of mine in her mid 40's was diagnosed with it last summer. We were almost to the point of planning her funeral, but she's still hanging on. Spends most of her time in the hospital, hooked up to every machine they have, getting regular blood transfusions, on dialysis, etc. etc.

I don't tell you all this to frighten you in any way, but just to suggest you ought to do a lot of reading and research on this.

My heart goes out to you and your girlfriend.

 

[FairytailGlennMinis]

Wow--what timing for this thread! I have been sick and struggling for about 6 months now and after a short stay at the Duke University Hospital they put things together that I have some form of autoimmune disease. Almost all of my bloodwork with these symptoms point to Lupus with Vascilitis, but we aren't sure if it is that or some other connective tissue disorder form of AI. I hope to find out more when I see the specialist on Thursday. Any AI (that is auto immune disorder) is basicly where the body's immune system is OVER active and starts attacking it's own systems. For me, it has been attacking my liver, my red bloodcells, areas of my veins (vasculities) and causing all sorts of havoc with my joints as well as screwing with my heart. Flat out, it sucks. I have been doing a LOT of research and the best thing I have found is that it is different for everyone...and that it tends to run in families, though the presentation of it may change. For example, my grandmother has Rheumatory Arthritis--another AI and Fibro Myalgia (sp). AIs don't have to stay in the same form within the family--they often change form slightly. Anyway, the first step is controlling the current flare up. They put me on IV steroids and sent me home with anti-inflamatories. My grandmother has to be on steroids like prednisone (it supresses the immune system) for months at a time when her flares are bad. You can do a search on prednisone to see the side affects.

The encouraging news I have found is that there are new meds and methods of treatment out now--things that have not been available in the past. Avoiding things that trigger pain and swelling can really help (heat, extreme cold, over tiring muscles, not getting enough sleep and STRESS) with the pain part of it. I don't much about the long term stuff yet, but am learning very quickly how to best avoid the swelling, etc!

Ask questions of your doctor! The best advice I have been given so far is to keep a journal of symptoms and what is going on at that time. Other than that...I will leave it to others who have more experience. Best of luck to your girlfriend! Just remember there ARE new treatments now.

As long as it is kept under control and they limit the organ damage (that means not waiting to see a doc!) then the outlook is supposed to be very good. I work with a girl that has Lupus and the beginning stages of MS--she is 35 years old and has had it for over 15 years--she is our school dance and fitness teacher. She does cardio classes and teaches and STILL tries to keep up with her classical ballet. Lupus is NOT a death sentence! It just means there has to be some little adjustments. Wow...I think I have made myself feel better in typing all of this!

hugs and prayers,

-Amy

 

[Sunny]

Wow! Hugs and prayers to you, too, Amy! Thank you for sharing your story. I found it very encouraging for my friend who is currently in hospital. She has suffered many of the same symptoms you described. The doctors had initially misdiagnosed her a couple of times, and it was actually her boyfriend who suggested it might be Lupus, just by the research he had done on the internet. Thank God the doctors listened to him because he was right.

My sincere best wishes to you.