This lupus thing is really driving me crazy, why can we not find a relative reason to this craziness?
I would like to hear what type of hair and skin conditions anyone had or remembers having prior to their lupus days. I will start with my mother, then me then what my daughter has and does deal with.
Mom: would often get what she called sweat bumps on her scalp, itchy like crazy, like our photosensitivity pimples we get. My child hood memory of taking a comb and scratching then until they almost bled to give her relief.
She would also have excessive dandruff but only in certain areas. And the more she had me and my sister "scratch" her head with the comb the bigger the flakes got and more relieved she felt. I understand that a scalp massgae is so soothing, but this would alleviate her pains.
Hair loss. By the clumps. I can remember seeing her, sitting at the kitchen table (I know this sounds gross) and running her fingers through her hair and have oodles of hair just wisp away as she waved her hand away from her hair. But she never really "lost" hair, it always grew back full and healthy.
Me: I had eczema as a child. I remember being sent to a dermatologist and myom having to use some special shampoo on me. It was never bad and I only remember it occurring a small handful of times.
Long silky blonde curly hair. That was me with clumps of it coming out, just like my mom's and still does. But my hair was always envied by people. The shower would always have to be cleaned when I was done. Hoards of hair was lost but new growth came in, just like my mom's.
Dandruff, identical to my mom's when I was a child, teenager and young adult.
I would also (and still do) get those "sweat bumps" the only difference is, my bumps now turn into bald spots.
My daughter: hair loss by the handfuls, dandruff that is atrocious! But no "sweat bumps"
There are some genetic similarities between the three of us. Oh! One other thing I failed to mention. My daughter's hair takes 24-36 hours to dry, mines does the same if I ponytail it right after a shower. This happens regardless of season, humidity level and heat or cold.
Maybe I'm grasping at straws because I am worried about my daughter having lupus and I am seeing commonalities among us, then again, maybe I'm not grasping and am just being aware?
But I would like to hear other people's stories surrounding their hair and scalp prior to diagnosis.
Written by
Lara4228
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My hair came out all around the edges of my hair. I hate the look it gives me. I have dreads. Lupus ain't strong enough for my dreads. I've had my dreads for almost 2 years. Before I was diagnosed with lupus my hair started falling out only around the edges. I thought my beautician messed my hair up. Had no idea I had lupus. My daughter has some of my symptoms. She was tested and she didn't have lupus. She wasn't tested by the right doctor and needs more testing. I'm the only one in my family with lupus and don't know of any family members who have lupus. Im so sorry you have had such a hard time with lupus. Stay strong and always count your blessings.
I have the same hair and scalp symptoms. Never related them to lupus, but now... I thought I as allergic to my sweat, since I break out horridly I n the back of my head when it's warm. My hair doesn't dry for beans either, have clippered it down to 1/4" when menopause was in full fury. Lose hair similarly, but it's still super thick. Thanks for making me feel less freakish.
I, too, have experienced hair loss in advance of a lupus flare particularly. I used to think of it as my canary in the coal mine! I started taking iodine supplements (from sea kelp only) as a boost to a sluggish thyroid and found that cured my problem permanently. I now take one pill per day (it's called Thyroid Support but I'm based in Canada so it might be called something different in the UK). You should be able to buy it from a health food store and make sure you only buy the natural product derived from sea kelp. I would definitely recommend a trial for 6-8 weeks. I think the financial outlay would be worth the test if you haven't tried it before (and, of course, if you are certain of not having an iodine sensitivity!). Best of luck!!!
We would advise anybody to check with their doctor before taking iodine supplements. They can have adverse effects on a number of conditions and potentially interact with a lot of treatments.
Yes I get the itchy sweat lumps on the back of my head periodically. My hairdresser asked me if I had been ill recently. When I asked her why she said "because you've got a lot of new growth". I had lost a lot of hair prior to diagnoses. I get eczema on my hands and elbows that is really itchy as well.
I don't have dandruff now. I stopped having it really bad when I was younger. I just it off that my family pretty much shares the same hair and skin problems and two of you three of us have confirmed lupus.
Hi Lara the itching on my scalp and around my ears was the first sign for me of lupus, I was given Betnovate - worth it's weight in gold and I still use it for flair ups and irritation around my ears going into scalp.
Hubby is having to take the small sink apart in the en suite this week-end because again although careful it is blocked with my hair, ditto the shower tray always blocked with hair, I'm amazed I've got any left! The good thing is that although it is so thin it does seem to keep growing though being so sparce it looks an unsightly mess. I wear clip in hair toppers when I go out and sometimes a hat, winter a bonus for those.
I don't see the point getting worked up about hair loss anymore, though I sympathise with anyone who gets upset, I realise that is understandable and I did at first it's all a matter of acceptence, when you accept things you can't change that's when you're on the right road. Just buy hair toppers which are very natural or a wig for when you go out and don't upset yourself about it.
Agree difficult to deal with lupus some days, the fatigue I find is the worse thing, the constant struggle to be/appear upbeat, plus the brain fog - lack of concentration is not easy.
I finally accepted my bald spots this summer. Wigs do not stay on my head (even though I keep trying to wear them and buy new ones lol) I'm done wearing a hat day in and day out.
I just cleaned the bathroom floor and my god! The amount of hair she loses so reminds me of myself when I was her age. I cry inside and hope she doesn't get what I have. Thinning...ok... inflammed, red scaly ugly looking bald spots...not ok. But, if that is what has, at least she has my support and trial and errors to know what to do about it
Funny how as a parent, you get that much more concerned, worried and anxiety ridden when your children go through what you did, yet when. We go through it, we just muddle through it lol
My fiancé told me to listen to it. I cried, but it definitely helped me out things in better perspective surrounding how hung up I was about seeing my spots.
What's a hair topper? I hate fake hair. Thank God my hair only came out around the Crown edges of my hair. Looks funny until I put a head band or scarf around it.
A hair topper, wig, toupee call it what you like. They are pieces of hair you wear that either cover your whole head or blend in with the hair you have now.
I have a few wigs but none fit and stay on. I've just got used to wearing hats, hair up in ponytail or lots and lots of mini claw clips to hide my spots. They are fairly large in size and are predominantly on my crown and down the sides of my head. They are beginning to grow in the back leading to the base of my skull.
I'm with you, I hate fake stuff. But when you see people with a horrified look on their faces when they see my crusty red inflammed spots...you kinda want to cover them up, for my own personal self esteem
Thankfully I don't have the irritation irritation irritating symptoms however have hair loss in a bad way. Have a small bold spot on the top near the front. Was wondering if you could tell me what kind of toppers do you use and how do they clip in.? Thanks
Hi loopy droopy you can ask in any good wig shop most have or know about hair toppers, usually they are quite flat with hair on the top going down both sides and the back. Most have four clips, one at the front, sides and one at the back. Easy to snap into place and very secure to wear, I've worn one for years, really great for thinning hair or hair loss. The clip could go in front of your bald spot to cover it, it's a matter of placing it right. If you get a good/reasonable topper it will last quite a while and can also be dyed to match your own hair. Toppers really do blend right in with your own hair and look very natural. After you buy one you might need your hairdresser - or do it yourself to cut to style.
Yes know what you mean about wigs they slip about, I've seen a piece on YouTube where some woman have found a good way to snip them about and turn them into toppers which would be much better having the security of clips - and not having them blow off in a breeze, oops there it goes. When I can be bothered I shall have a go with a couple of mine, start with cheapest.
Interesting. I will have to look that up. I've had about (underestimating here) 12 hours of wig fitting. Finally, at the last one, the lady suggested I corn row the top of my head and clip them into them. I haven't tried it yet, but then that doesn't cover the problem of the wigs slipping up the back of my head
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