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Comment by Brenda, IL US on July 25, 2013 at 2:15pm

I'm not quite ready for a wig either. I think i"ll try the headbands. I want to get brows tattooed. Can you do that if you're getting injections?

Comment by KarenGinny - Iowa, US on July 25, 2013 at 2:06pm

Brenda, I also wanted to say that don't worry about talking about yourself too much, that's the best way to share your story and let us all understand what you're going through - what we're all going through. Sometimes writing it all out is a good way to deal with it. My husband is very understanding but still he doesn't know what it's like to be a woman with hair loss. Other people act like it's "only hair" and not even noticeable, but to us it is. We are the ones who have to deal with it every day and try to make ourselves presentable to the outside world so we don't get stared at or presumed to have a deadly illness. I have been wearing stretchy cotton headbands to hide my bald areas at the temples and forehead. I wear them under my hair and bring my bangs down over them and it helps when I go outside and the wind wants to blow my hair all over. I'm not sure if it looks right or not but it's the best I can do. Or I have a cotton baseball style cap I wear to my son's baseball games or out walking. I've never really been a hat person, but now I have to be. Indoors I just wear my long bangs down to cover my forehead as well as I can but they are thin, and my head is probably still visable. I'm not ready for a wig at this point yet, since the back of my hair is still fairly thick. What does everyone else do to hide their hair loss??

Comment by Brenda, IL US on July 25, 2013 at 1:07pm

Thanks so much for the kind words. So happy i found all of you!! I already feel so much better!! Much thanks to Celia!! I found a good wide brimmed hat in the garden dept at WalMart thats made of recycled paper and polyester that has a drawcord under the chin. Lightweight and not as hot as others ive worn.

Comment by Brenda, IL US on July 25, 2013 at 11:46am

I may have been using too much Clobetasol. Will try it again. Depression and anxiety is something i've been dealing with for two years. My lupus doctor put me on the generic for Effexor. Then added 150 mg of Bupropion. Helps a lot for the depression but not the anxiety. My company made me go on long term disability exactly two years ago today. I patrolled power lines on an ATV and read electric and gas meters. I could only do half of the work at the end. The lupus kicked my butt. I went from walking all day almost every day to sitting on the couch crying and feeling sorry for myself. Gained over 20 pounds not being active and taking prednisone. Meds helped me get off the couch but hard to get rid of the weight. Im taking omeprazole for GERD so that might be why im not having stomach issues. Sorry im writing so much about myself. My boyfriend's never let me talk about it. He believes if you talk about problems it makes you worse. Will go to NAAFs website. Thanks

Comment by Pam on July 25, 2013 at 11:35am

I have not worn a hairpiece or wig yet, but feel that I am now at the stage that I need to, as my hairline has receded so much that I am feeling extremely aware of it all the time, and it is adversely affecting my life (especially on windy days!). An old friend who hadn`t seen me for a couple of years asked me very concernedly what was the matter with my hair and whether I was having cancer treatment...so that is evidence that other people are noticing it!

I would really appreciate some feedback from people who are now using hair systems, wigs, or hair pieces.

I have looked at intralace systems online (Lucinda Ellery) which sound amazing on their website (of course!), but then I have also seen that some users have commented on the fact that they can destroy your own hair by the way they are attached, apart from being incredibly expensive.

Are synthetic wigs easier to maintain as real hair, and just as good?

People talk about "Cheap" wigs, and quality wigs - how does one tell the difference?

Are top pieces, 3/4 wigs, clip on hair pieces easy to use? My hair is OK at the back, but vanishing at the sides and front hairline.

I have seen places advertising free consultations etc, but I don`t want to get taken in, and go along the wrong path. Help!
I am feeling rather lost trying to investigate all the options, and would so like some advice here!

Comment by Annie on July 25, 2013 at 10:44am

Brenda, I used 5% Clobetasol lotion for a little over two months. My doctor said that my scalp might be tender for a few days until I got used to it, but the itching & burning never stopped. The worst part was that I was never able to forget about FFA with my itchy, sore scalp. (My husband remarked that I reminded him of a monkey always scratching my head.) My doctor seemed surprised, but said I could stop using it for a few weeks, then try using it every other day. He also said I might be using too much. It only takes a tiny bit.

Comment by Brenda, IL US on July 25, 2013 at 10:23am

Hi Debs. Thanks for the welcome. I see my dermatologist Tuesday because the Clobetasol seems to be causing more inflammation and itching than what i started with. Has anyone had this problem? I have some Desonate gel for eczema that i put on my scalp that is helping now.

Comment by Debs on July 25, 2013 at 5:01am

Brenda, hello and welcome to the group. I am sorry you have lupus to deal with as well as FFA. We are all in this together and having each other in this group that Celia started only a year ago is a life saver for me. Any questions you have please just post on here and we will all try to pitch in and help. XXXX

Comment by Annie on July 24, 2013 at 3:48pm

Brenda, I'm glad to hear that you think Plaquenil has helped. We all take it with the understanding that we have a 50/50 chance that it will slow down the hair loss. I've made up my mind to expect that it will work for me. Maybe there's something to be said for the placebo effect.

Comment by Brenda, IL US on July 24, 2013 at 3:10pm

Hi Carol. We never know what lifes going to throw at us. My parents died a month and a half apart in 1992 and then i got fogged with farm chemicals nine days later. Think thats what brought on the lupus. Im sorry youve had to deal with so much. Try the plaquenil again. I think its helped me. I know its helped my lupus.

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