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Discussion Starter #1
Ok, so I already wear hats all the time when I go outside, but it hasn't been to hide my head. But now my hair is coming out in fistfuls. It's all over the house. And the doctor says yes, I may lose it all. I'm headed to a new rheumy in March, but by then I'll be showing big spots of scalp. And no guarantees he'll have anything for it.

Any suggestions, beyond scarfs, hats and lots of hairspray? Are there products that will slow down the rate of loss or maybe help my poor head??

Sunny
(and I am NOT one who has a great looking head structure)
 

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Dear Sunny, I don't have any suggestions, just wanted to sympathise. In some places in the UK Cancer Support groups have good hair loss advice. Where I live there is even a little private Salon for wig consultations and wigs can be cut and styled to suit individual taste. This is a recent thing here and I think it is a great idea. I never lost all of mine but did lose quite a bit. It did recover but I no longer take it for granted.
x Lola
 

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Pollianna
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Hi Sunny, replied somewhere else but can't remember where? What colour is your hair? I use eyeshadow to cover thin areas but mine is almost black so it's easier to do. Ty it if you have one the right shade. It's cheap and safe and handy, doesn't drip if your hair gets wet
 

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Discussion Starter #4
My hair is silver-white, And it's really quick to show my shiny pink scalp underneath, LOL. I can't imagine being able to cover it very well. It's fine and has always been really thick. The only comfort I get is that this happened before. I lost about half of my hair before. I blamed it then on starting Imuran. But maybe it was just disease process being out of control that time and this. I hope it stops falling soon. My whole house is covered with long silver hair.:eek:

Sunny
 

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Arghhhhh another one :( :hug: I only hope this Rheumy is helpful and gets you back on some decent meds Sunny.

Have you tried Nioxin? A lot of people say it really helps.

At the risk of stating the obvious have they tested your thyroid function.........I remember you saying you had put on a lot of weight recently too, would be worth checking.

Hugs,

Lily
 

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I too have been losing hair since 2005. My new dermatologist recently suggested Rogaine. He suggested the mens foam, said its less messy and works faster. You might mention it to your doctor

I also have low iron levels and have for years since I have been sick. Have you had your iron levels checked lately? Hemoglobin and Ferritin. Even if your hemoglobin level is "within range", ferritin should be checked too. Doctors don't usually check ferritin. A level of less that 70 for ferritin can contribute to hair loss, even if iron deficiency isn't the sole cause of your hair loss. (For example, you could have Lupus which is causing hair loss, and then in turn lupus could be causing low iron levels which can contribute to hair loss as well) Legit hair experts truly believe in the ferritin thing. ;)(Just don't want you to think its quackery). I've take iron for so long, but I can't get my numbers up.

Hopefully that info might help....some doctors who are experts in hair loss are Phillip Kingsley and Wilma Bergfeld. You might try googling them and you'll see different articles on their thoughts on hair loss. Dr. Kingsley has written books on the subject as well.

Lily (not me the other one :) ) made a good suggestion, too...to get your thyroid check especially if you have put on weight recently as thyroid issues can contribute to hair loss as well. From, what I have read...I'm no doctor, you want to get your TSH (Thyroid Stimulating Hormone) tested. You'll want to see the result...as most doctors look at the range and if you are in it then they think nothing is wrong. However, in my opinion you want to be somewhere in the range of .5 to 3 or 4. So, just another thought.
 

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Hi again,

Whilst we are on the subject of thyroid Lily made a good point about the range. I had a friend recently diagnosed with Hashimotos and that would not have happened if she hadn't been so insistent on correct testing. In her case the TSH and I think T3 & T4 were within range..................however she had so many typical symptoms she insisted he test for thyroid antibodies. He did it just to humour her and it came back sky high! She is now on medication and is feeling much better.

Just goes to show how many fall through the cracks.............and it's often around menopause so they pull that one out as an excuse if their first round of tests is ok :mad:

love
Lily
 

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Pollianna
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ohh yeah, falling through the cracks!! the title of my autobiography lol

sunny, you can buy a silver eyeshadow, the kind you put under the eyebrows. It will hide the pink of your scalp and blend into your haircolour. let me know if you try it
 

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confused1;531486 said:
Ok, so I already wear hats all the time when I go outside, but it hasn't been to hide my head. But now my hair is coming out in fistfuls. It's all over the house. And the doctor says yes, I may lose it all. I'm headed to a new rheumy in March, but by then I'll be showing big spots of scalp. And no guarantees he'll have anything for it.

Any suggestions, beyond scarfs, hats and lots of hairspray? Are there products that will slow down the rate of loss or maybe help my poor head??

Sunny
(and I am NOT one who has a great looking head structure)
Hi Sunny

My hair has also come out.....BIG TIME, so I can totally understand the fear, frustration and pain you are going through. I have had episodes of painfully slow regrowth only for it to come out again/break off as my hair is so brittle in places. It's an absolute nightmare.

I am getting through this phase (three long years now) by wearing lots of headbands (thank goodness they're in fashion!). Previously I used coloured thickening sprays, ie. Mane/Good Looking Hair which gave me a bit of confidence once I got the hang of using them.

Before my recent diagnosis of cutaneous lupus/psoriasis I tried every lotion, potion and pill to try and get my hair to come back but nothing really worked. I'm due to start Methotrexate and I'm hoping it will have some effect but I am wondering whether things have gone on too long now having been misdiagnosed and fobbed off for years. If this is the case I will probably look into semi permanent hair pieces/weaves.....if celebrities can wear them so can I! Have you though about this option?

Regain (mainly used for AGA hair loss) is a nightmare because it requires continual application.....once you stop hair will begin to thin again. It doesn't really fix the problem....not sure if it is really suitable for lupus hair loss anyway. The only thing that did seem to stabilise things a bit for me was Nizoral shampoo and also taking supplements as my ferritin level was low, ie. 11, when my hair started to fall. Ideally it needs to be about 70 for you to maintain your hair/have regrowth so it might be prudent to get this checked.

Anyway, I hope things get better for you soon and that you find a solution suitable for you.
 
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