Hair falling out

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Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 3/10/2010 1:11 PM (GMT -6)   
 I have very long hair. It's falling out a handfull a day. I don't have any bald spots but half my hair is gone. It's so thin I had to buy new hair clips and scrunchis to fit. Friends are telling me that only the meds cause your hair to fall out only I am not on any yet so can your hair still fall out with lupus or what?

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Date Joined May 2005
Total Posts : 7720
   Posted 3/10/2010 1:49 PM (GMT -6)   
Yes, lupus can cause thinning hair.

Have you been diagnosed yet? Please make sure to add this to the list of symptoms you take to your doctor visits.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 3/10/2010 3:18 PM (GMT -6)   
 No I haven't been diagnosed yet. The first 2 times I went to see him things were not half as bad. I had a posative ANA 1:1280. I felt lethargic all the time and I have flare ups in my joints.Before He said I have an auto immune disease but he wasn't sure what so he did more blood work, everything but the ANA was negative, He ordered a bone scan which showed I have arthritis in all my joints. he didn't want to treat me untill he knew more. I just take tramadol and ibuprofin. When I get desperate I take my husbands vicodine shhhhhh you didn't hear that.  Well since I saw him last in Dec My hair is falling out, Along with the lethargy comes horrible muscle pain. I'm talkin muscles I never knew I had, Heart palpitations, I have night sweats where I wake up drenched!!!!!  My legs, ankles and feet swell' and I have a great picture to show him of my butterfly rash which is also new. So I am going back to him tomorrow we'll see what he says. I can deal with just about any of these symptoms except for the muscle pain. I can't move, sleep or anything he better do something. Whats scary is we only have 11 rheumy's in this state and most of them aren't takin new patients

Post Edited (louise47) : 3/10/2010 9:22:55 PM (GMT-7)

Veteran Member

Date Joined Mar 2006
Total Posts : 2607
   Posted 3/10/2010 5:36 PM (GMT -6)   
Louise, I hate to hear how bad you're feeling. Losing your hair must be scary. I understand the muscle pain because I'm in so much pain that sometimes I can hardly walk. I hope you have a good rheumy. Take care.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

Regular Member

Date Joined Dec 2009
Total Posts : 26
   Posted 3/11/2010 6:55 AM (GMT -6)   
I can totally ANA finally came back positive so my rheumy decided he had to treat me at this point...he started me on Plaquenil 200mg twice a day. I have noticed that my hair has been falling a more subtle way that made me thinking that I was possibly imaging it...well last night I went to have my hair trimmed and as soon as I walked in the door my cousin (the hairstylist) could tell right away...just by looking at me...that my hair had dramatically thinned out since she saw me basically she confirmed what I had been fearing all along. So it must be pretty bad because she took it upon herself to chop almost all of my hair off! So now I am scanning the internet looking for a nice hat to wear. I had been hoping to hide my illness from my professors at school but maybe it's getting about that time to do some explaining...I just have to keep reminding day at a time girl!...

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 3/11/2010 12:53 PM (GMT -6)   
Thanks for your input. Today is the day. we will see if my doctor wakes up an decides to treat me.
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