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Hi,

 

I'm still trying to do some research for my aunt; she has systemic scleroderma.

 

I was wondering if anyone has advice on hair loss products that might work as she can't use anything like minoxidil. Any ideas?

 

Thanks and best wishes.

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Hello Angela

 

Welcome to the main forum!

 

Hair loss for women can be particulaly traumatic and hard to adjust too. My sister has discoid lupus and has lost patches of hair, these patches are called alopecia scarring and she's been told the hair will never grow back. She wears wigs as unfortunately some of the patches are on the top of the head so clearly visible.

 

We have information on this site regarding hair loss have a look at our overview of alopecia.

 

In addition here is some information from MayoClinic.com on Hair loss. The section on Hair loss: Treatments and drugs discusses several options, including treatment with corticosteroids and the topical treatment anthralin.

 

I hope this helps and no doubt others will chip in soon. Have you tried looking on the internet for a U.K. alopecia group? They are out there and they may be able to give you other suggestions.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Angela,

 

I found that after a couple of years my hair has pretty much come back to normal. I can't recommend a product to stimulate regrowth, but I would advise using the most gentle shampoo she can find, a really good conditioner, and very careful handling of her hair to minimize breakage and 'traction' loss. I use shampoo and conditioner for colored hair (very gentle and has sunscreens) and then top off with a leave-in conditioner.

 

warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I have had hair loss off and on for the past 9 years. The first time I lost about 75% of my hair. They told me I had alopecia and that it could come back, and then it may not. At that time I know I tried several things but I don't remember what all they were. I do remember my dermatologist told me that had they caught the hair loss sooner, they could have given me shots, but that it was too far spread and could not give shots due to that reason. My hair did come back in and did really well until about 2 years ago. I noticed the patches again. I went to my dermatologist and I got shots in each of the patches and I continued to get those shots every month for 6 months. The hair came back. About 6 months ago I noticed 3 small patches. I went to the dermatologist and got the shots again. Had to go 2 times and the 2nd time they said the hair was growing back in. Just the other day I did notice a couple more spots so I will be calling my dermatologist on Monday and I know she will give me more shots. I haven't figured out if this is due to thyroid or the scleroderma. I do know that I don't want it to get like it did 9 years ago if I can help it.


Gigi08

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Sorry Angela, I do not know the name of them but I can ask the next time I go. I do know that they are a steroid but they said that there are no side affects with the shot.


Gigi08

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Hi Angela,

 

Most hair transplant surgeons give free consultations regarding hair loss. My husband had a lot of hair loss but he wasn't a good candidate for hair transplant due to other considerations. So the surgeon recommended several things, and my husband settled on a laser hair brush. He uses it for a total of 45 minutes a week and has had wonderful success with it, with the patches growing in and the hair becoming thicker. We were very skeptical of it (what good could just a red light do?!) but they are FDA approved for the treatment of male pattern hair loss. Beware of cheap imitations, of course as the internet is ripe with rip-offs. And don't assume that because it works for one type of hair loss that it would work for another.

 

That's where the experts come in handy! So take her to an expert for a free consultation. Their free advice and explanation of risks, costs, and benefits can be worth its weight in gold.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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