Lupus

My good friend who is only 31 yrs old may have Lupus. her ANA levels are high so the dr is doign tests to confirm it. Can anyone inform me about it? Does anyone knwo of anyone that has it?? thanks

Re: Lupus

My SO's sister has it, just diagnosed last year (she is 33 or 34) and my very good friend from high school has it (he got it when he was about 12 or 13). My SO's sister is doing OK with medication, and my friend has survived nearly 20 years with it...

It is an autoimmune disease. Here is a link with frequently asked questions.



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

Re: Lupus

Re: Lupus

I have a friend who has that AND rheumatoid arthritis. They are very similar and often mistaken for each other. It took her a long time to get a diagnosis.

It's a nasty disease but people do go into remission with it.

Re: Lupus

to your friend
that disease scares me

Re: Lupus

ANA can be a tricky thing, she should get a second opinion in the end.

When I lost my baby 8 years ago, they diagnosed me with... incorrectly ( I think) Lupus. My ANA wasnt even that high, but they needed answers I think and since there is no solid test for lupus, it was the diagnosis I was given.

I was given steriods, I dont think I needed.

a year later I had a brain MRI...Based on that they "changed" my diagnosis to MS ( the symtpoms are very similair to Lupus) and taken off the steriods.

Not really feeling this, I saw a neuologist and a rhumotologist (sp?) and it was determined I had NEITHER. I had chronic Epstein Barr which is no where near as threatening as either diagnosis and causes me nothing but some tiredness and frequent colds..

Let me tell you it was a scary time for me, especially being told none of it could be treated well..

So tell yoru friend to do as much research as she can , because there can never be a clear cut way to diagnosis some immune disorders and hopefully it will save her a LOT of fear in the end.

On a positive note, my senior at work has Lupus and has for years, I have never ever heard her complain , a day in her life about it...so it can be something that does not change your life that much, depending on the severity.

I hope she is ok in the end.

Re: Lupus

Posted by dm24angel

ANA can be a tricky thing, she should get a second opinion in the end.

When I lost my baby 8 years ago, they diagnosed me with... incorrectly ( I think) Lupus. My ANA wasnt even that high, but they needed answers I think and since there is no solid test for lupus, it was the diagnosis I was given.

I was given steriods, I dont think I needed.

a year later I had a brain MRI...Based on that they "changed" my diagnosis to MS ( the symtpoms are very similair to Lupus) and taken off the steriods.

Not really feeling this, I saw a neuologist and a rhumotologist (sp?) and it was determined I had NEITHER. I had chronic Epstein Barr which is no where near as threatening as either diagnosis and causes me nothing but some tiredness and frequent colds..

Let me tell you it was a scary time for me, especially being told none of it could be treated well..

So tell yoru friend to do as much research as she can , because there can never be a clear cut way to diagnosis some immune disorders and hopefully it will save her a LOT of fear in the end.

On a positive note, my senior at work has Lupus and has for years, I have never ever heard her complain , a day in her life about it...so it can be something that does not change your life that much, depending on the severity.

I hope she is ok in the end.

Re: Lupus

my little sister had it and i was diagnosed last month - i agree it is scarry

Re: Lupus

MY ANA levels were screwed up and they thought I had Leukemia, Lupus, or Rheumatoid Arthritis. I went to every doctor possible. Then I got another opinion from a 2nd hematologist at NSLIJ. They diagnosed with me with ITP (platelet Disorder) and APL (Anti-phospholipid Syndrome). APL was causing the ITP which made my platelets low all of the time because my body destroyed them. They put me through prednisone, and all other kinds of treatments. Finally.. I had treatments of Rituxan (a form of Chemo without the hairloss or Nausea) and now i'm in remission!!!! 4 weekly treatments and now i'm living a normal life again!!!! I totally recommend where I Went if you want a second opinion. FM if you want the info.!!

Best of luck to your friend! Tell them to hang in there !! It's tough, but being positive will help you through it!!