Suspected Lupus

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New Member

Date Joined Sep 2012
Total Posts : 7
   Posted 9/27/2012 12:42 AM (GMT -6)   
Hi all! I'm not new here-used to be on the fibro forum alot (as dori18), and forgot all my login info! Anyways, it's been a while. 26 year old wife and mom of 3.
My doctor has diagnosed me with "lupus like autoimmune disease." The growing list of symptoms he says fits lupus to a T he said he just has to prove it on paper. I was also recently diagnosed with IgA deficiency (an immune deficiency that lupus commonly accompanies) and celiacs disease.
Chronic pain, with swelling joints, sunburn like rash on cheeks/nose/forehead, chronic fatigue, digestive issues which recently include vomiting not helped by anything but steroids, chronic headace, and digestive issues (also common in IgA def). Well the laundry list is long, and goes through phases. And recently my hair fell out. Which he wants to group in the lupus category as well. Has anyone else lost their hair to lupus? Is it common? Does it grow back?


Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 9/27/2012 8:35 AM (GMT -6)   
Hi Amy,

Yes, it is common to lose your hair due to lupus. I have talked to many people who have. I am sorry you are facing the lupus diagnosis but know we are here to answer any questions you might have from our personal experiences.
Lupus Moderater

dialysis from lupus nephritis

New Member

Date Joined Sep 2012
Total Posts : 5
   Posted 9/27/2012 10:24 AM (GMT -6)   
My hair fell out last fall over a period of about three months.  I had to purchase a couple of wigs.  After going on plaquinil and also a topical ointment, clobetasol, it started to come in good.  I went without the wig for almost 2 months this summer and then it has started falling out again.  Needless to say the wig is back on.  I don't really understand this...I go back to my reumy tomorrow...

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/27/2012 12:46 PM (GMT -6)   
Thankfully I have very thick hair and when I went through the hair loss recently it just made it thinner. I still looked normal for most people, but I could feel the stubble underneath.

It's coming back in curly though. :O
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

New Member

Date Joined Sep 2012
Total Posts : 7
   Posted 9/27/2012 11:26 PM (GMT -6)   
Thank you guys for your response. The referral for the reumatologist went in today. Another "ologist" to add to the list! It was less scary when we thought it was just fibro! Has anyone else had any excessive vomiting? The only time the vomiting and stomach pain stops is when I am on steroids! And I am off them for a week to draw more labs....

Suspected SLE, Chronic Pain, IgA deficiency, Celiacs Disease, Chronic Vitamin D Deficiency, GERD

New Member

Date Joined Jun 2011
Total Posts : 14
   Posted 9/27/2012 11:43 PM (GMT -6)   
I've had almost all of those things- the headaches, the digestive issues, and hair loss. Before being diagnosed, for years I ended up in the ER with severe vomiting and stomach pain, for absolutely no reason at all- not eating horribly,etc. It would last for about 24-36 hours and drain the life out of me. Usually including an upset stomach of the other variety as well, so really not fun. There was no pattern to it, except that stress was a factor. It would start pretty suddenly. I could wake up feeling fine and a few hours later, I was gray and on the bathroom floor. All the tests were negative, but since being diagnosed with lupus and being on a regimen on cell cept (pred in the beginning), and adding plaquenil and keeping the disease in check- I haven't (knock on wood) had even ONE episode in over a year and a half. That's amazing for me. It used to really make me feel like it was controlling my life- it was crazy, and it was jeapordizing my job at times too- I was miserable. So hopefully when they can diagnose you, they can get it under control systemically, and not try and control it symptomatically- which only went so far with me.
The hair, I lost over half of it. And it's really taken about a year and a half for it to really start looking normal for me again. But if I have any advice- don't be like me and hold onto longer hair when it gets thin. I cut it short and it looks much better :o)
As for headaches, now I'm on topomax, and for the most part they're under control. But it's not hard to get one- sun is the biggest culprit.

New Member

Date Joined Sep 2012
Total Posts : 7
   Posted 9/28/2012 11:36 PM (GMT -6)   
Thank you. That is hopeful. With as big a deal as the air us (I'm 26, and work in a busy WIC clinic teaching breastfeeding classes, so front and center) I justwant the puking to stop. I think my teeth are about to abandon ship!
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