Hi, For the last 15 years my hair has been getting thinner and thinner and has now got to the stage that if I am near lights my bald patches 'Glow' and I am getting more depressed about it. I have asked the doctor about medication I Know you can get that helps and the response was "Well, yes it works but as soon as you stop taking them it will come out again" ! ! Hello - I.m 67 years old with Lupus SLE and am on 10 different tablets some 4 times a day and still on Oramorph at night after a major spine opp. did not go as planned and I can not lay down without it. So what difference would ONE more pill a day make ?
Cut a long story short I bit the bullet on Tuesday and went for a wig, it was so hard to walk through that door, but the young lady who owns the shop has Total alaopeocia (can't spell that !) She made me feel so at ease and it helped that she knew all about Lupus. I bought the thinnest one, as I perspire a lot with the meds. Hubby's response - "Didn't they have a Blonde one" , I did have long blonde hair but that was 50 years ago !!! and it has grown 'mousey' over the Many years.
I it almost the same colour as my hair, but obviously No Bald top and sides patches. I plucked up courage to go to my Slimming World club on Wednesday and obviously they all knew it was a wig as I have been going for years, but everyone said It was great (and believe me, we are Bluntly honest with each other and are like family and great friends). Four of the men said it made me look 10 years younger (Flattery will get them everywhere! )and one of the girls who has the same problem asked where I got it from so she could go. It was so hard walking in that door, but now I wonder why I worried.
Last night I went out for a meal with my Hubby and wore it, that was going to be the BIG test. I did not perspire at all and did not feel as self conscious as I would have done without it on.
So Lady's , if you are getting depressed about your hair - or Lack of it in my place, do go along a get good advice and go for the Thinnest one if like me you perspire with the meds. By the way it was £75.
I hope this has helped someone, if it helps just 1 person I will be happy.xx
Written by
hazelHollingsworth
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Hi am only 26 and realise my hair falling out a lot.. It's not really long but not short either if u get me ! Think am gonna have to cut it up short to try thicking it up. Going thru a tough time at the moment and my hair just isn't helping how I feel.. Did u ever dye ur hair? My rhemo doc told mr to use baby shampoo which has helped a bit but now that sm going thru this rough patch my hair is just falling away ! It's so upsetting !!
so pleased you have found a solution for your hair loss. I am 40 and have lost two thirds of my hair to lupus, in patches all over my head. Finally last summer, as I was getting so down about it, I took the 'bull by the horns' and my husband shaved the rest of my hair off. I now look like a golf ball haha!! but feel like I've regained control of this damn lupus. My three kids think I'm cool which helps alot!!! That doesn't mean I don't find it hard at time because I really do - people stare and make comments all the time but so few people realise that lupus can cause such dramatic hair loss and I'm only to pleased to make them aware!
Vonnie, a girl who come to Our Sheffield Lupus group meeting has done that and she looks beautiful, but not a look a 67 year old could carry off. But thanks for the reply.xx
I've been struggling with hair loss longer than I've had SLE. I take Synthroid and must take Coumadin now for life, due to DVT's twice. I started out with a vitamin called Biotin years ago. I started with 1000 mcg's and over the years worked up to 10,000 mcg's with Keratin. The capsule is humongous and not easy to swallow - but it seems to be the only pill that's been working about 80%. My hair still falls out a bit - even when bending over the sick to brush my teeth. My hairdresser has noticed the difference as well. I used to take a haircut 4 times a year - now I go every six weeks or so. It's only a vitamin, but it's worth a try! I understand SLE - trust me! I also have ITP and MDS and abnormal labs always. I see my hematologist every week or two. I understand every symptom I read about on this site - I'm there!
Thank you for your reply Margaret, yes I was wearing the wig in the photo and am getting used to wearing now when I go out.
Re-Back. I tried everything known, from patches to injections 'they have said' there is nothing they can do to - undo the 'scaffolding' in my spine now. Stuck with it so just take the medicine and thank god I can still swim even if I can't walk. xx
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