Hello Raphael,

I'm new today to this site.  I was diagnosed with Lupus in 1993ish....  A long time ago.  No family history that has been diagnosed to my knowledge.  I educated myself about lupus and listened to my body.  What a lesson that was and is.......   ongoing...... as SLE constantly tests me with other symptoms.    I was on medication for about 8 years then in remission for 8.  Just back on with a flare since January.  Hoping to get off this fall.

I wish you good health

Twylia

Hi, I have Lupus (SLE) diagnosed in 1999; it took several doctors and 10 years to make the diagnoses. I have done a lot of research on Lupus as I was in denial until I read and understand the signs, symptoms and the other syndromes related with Lupus. I continue to do research on Lupus and belong to a local support group for the past 6 years that is most helpful. My Lupus continues to be problematic; I have been on and off several medications since 1999 including prednisone, anti-inflammatories (nsaids), immunosuppressive drugs (Imuran, Methotrexate and Cellcept) and pain meds. I have become disable due to my Lupus.

Please pardon me if I ask a few questions, I assume the hospital and/or the Lupus clinic has probably asked you all of these questions.  I also assume your wife has (SLE) Lupus. How and when was your wife diagnosed? Did your wife have Lupus before or after her pregnancy?

From my limited knowledge and from what I read there is a genetic predisposition to Lupus occurs in about 10% of Lupus patients. Some factors that may trigger Lupus are; infections, antibiotics especially those in the sulfa groups (I am allergic to sulfa), sun exposure and stress. I understand why the doctors are thinking your daughter may be to young to have Lupus is most common is women to develop it between the ages of 15 and 45. However she may indeed have Lupus. Your daughter may be just younger than most. There are no two people that have the same symptoms and syndromes of Lupus. There is no single test to tell if one has Lupus. You may want to look up Internet Lupus sites. Just type in "Lupus". Please take care and I hope all goes well for your family. I look forward to see how your daughter is doing.

Please all of us should continua to ask The Doctors to have this topic on a show! There  are many more people with Lupus than you think,

Sherl (whysox)

Yes, by all means, keep us updated.  All of us are very concerned about her and both you and your wife.  I am so sorry you are going through this.  I wasn't diagnosed until 6-1-99 and in remission on 6-8-2000.  That doesn't mean I don't have flares.  I had a major one in 2006 when I was flying back from Baltimore to Phoenix via Atlanta.  That was the longest flight I've ever taken, it seemed even longer than going to Europe, which was ten hours and thirteen hours.  I think coming back was ten hours, but I'm not sure.  I don't remember.  But, as of right now, I'm in remission from the Lupus.  However, being that is a holiday, I awoke with a UTI.  Not fun.  I have to fill out all these forms for Nextcare as a new patient, then they call me back and verify that what I said was what I had on there.  AAAAAAAAARGH!!!!!  But, I will be fine once I get the antibiotic and the pain medication.

I don't take anything for the pain in my joints and muscles except Excedrin.  That helps dull the pain, but doesn't take it away.  It just makes it easier to live with.  I've had Lupus probably for a very long time because in our group meetings, people say they had chronic bronchitis, colds, everything ever since they were young, but weren't diagnosed until much later. 

Well, take care and I wish you all the very best. 

Anne

It is my 9 year old daughter. The symptoms started in Feb 2009, with a red rash on her cheeks, we consulted our GP and he had indicated that it could just be an allergic reaction to something, now in his defense we did indicate that it happened when we were around my niece's dog. But since then it has occurred on other occasions so the allergic reaction is ruled out. We also consulted with my wife's Rheumatologist and we were told that she is a bit young and she also did not present other symptoms.

2 Weeks ago she got a cold that developed into Step Throat, we took her to the Dr and she was been treated with Antibiotics. Last week Saturday she could not walk and at that point we took her to the Hospital for Sick Children in Toronto (aka Sick Kids). They ran numerous tests and they have indicated that the likely of it being Lupus is a possibility because of my wife's medical history. Besides the joint pain and swelling her entire body was covered in a red rash, but the rash was not itchy or burning. As you know the Lupus blood tests take a few days & we are waiting for the results

They have put my daughter on Naprosyn which is anti-inflammatory which is helping. We have an appointment scheduled with the Sick Kids at their Lupus Clinic.

I will keep this blog updated...

Now you've got four responses from me.  I'm sorry about that.  You poor man.  I must have stuttered somewhere.  Now I'll quit.

I just re-read your blog and I just assumed it was your daughter who was showing symptoms.  Is it your daughter or son?

I just re-read your blog and I just assumed it was your daughter who was showing symptoms.  Is it your daughter or son?

Hi, Raphael:

I so much want to have them do a show on Lupus.  I have it as well as other Doctors online friends.  I'm afraid to suggest it, though, because I'm afraid people will think that's a dumb thing to do, to have a whole show about it.  Even just half the show.  Today, they did an immune show with foods that boost your immune system.  Well, believe me, we DO NOT need to have it boosted anymore.  I have SLE.  Which is it that your wife has?  I probably already know the answer to that.  Anyway, I have had a stroke in '80 and against late last year.  The one last year was a TIA, transient ischemic attack.  It made my left arm and the back of my left knee go totally numb.  I had cardiac symptoms, too.  I almost passed out, I didn't know what the phone was for.  I just picked up something (the phone) and started dialing three numbers and hanging up.  Why, I haven't a clue.  Anyway, I recovered from that, but I don't know if that was related to my having Lupus because everything, anything can be affected by that.  What are the symptoms your daughter has?  How old is she?  I sure hope she doesn't.  Now that it's known that Michael Jackson had it, Liz Taylor has it, Anna Nicole Smith had it, and why the big stars don't do anything about it.  It's like hush-hush, which hurts us because we seriously need to get the word out.  Anna Nicole told her publicist she was diagnosed with it about five days before she died, but she told him not to tell anyone.  That's so irritating.

I wish you all the best.  I look forward to hearing more from you.  Let's get the Doctors to do a show on it. 

Take care.

Anne