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Posted 1/23/2009 8:04 PM (GMT 0)
Hi everyone, just wanted to let you know that I'm trying something for my desperately thinning hair.  You may have heard of it, it's called Nioxin.  It's a shampoo, conditioner and scalp treatment.  Personally, I can't afford it,but my mom got it for me for Christmas off Amazon.  So far I must say that although I don't see much new growth, I am seeing much less hair in the sink after styling and the hair I have left appears thicker and stronger.  I'll let you know how it progresses.  Just wanted to share.  God Bless.
Posted 1/23/2009 8:50 PM (GMT 0)
Thanks Jennifer.  I started having trouble with hair loss this fall - which has slowed down (no more handfuls all at once) but I appreciate you bringing this up. Please let us know how it goes with the Nioxin and I hope it works well for you!  Lucy 

Posted 1/23/2009 9:24 PM (GMT 0)
Hair loss must be so hard to deal with. I hope the nioxin works for you.
Posted 1/26/2009 5:08 AM (GMT 0)
Jennifer--
Have you gotten your FSH tested (follicle stimulating hormone)? It is a simple blood test. If it is abnormal, you will lose hair, but there are things that can be done in that case. The thyroid is another one to check. Some docs think that it as to be coming out by the handfulls for your FSH to be out of whack, but it doesn't always. I'm glad you found a shampoo to try that you like as well. I hope it goes away and grows back.
Posted 1/29/2009 1:59 PM (GMT 0)
It seems too hard to have deal.
Posted 2/28/2009 6:26 AM (GMT 0)
I have had thin hair for most of my life. When I was dx with Lupus I finally knew why. Nothing ever helped me until I started taking Plaqunil. My hair is still fine, but it is finally growing and it doesn't fall out in handfuls anymore. It is always good to use good shampoo when your hair isn't healthy. I hope the Nioxin helps...:)
Posted 3/1/2009 6:52 PM (GMT 0)
I started experiencing hair loss about 6 months or so ago.  I'm very fortunate that I had thick hair to start with, but it's still hard.  I know that my hair is thinner.  Mostly on the top and the sides, which from my research is commonplace in lupus.  In the last two weeks or so I started losing my eyelashes too.  They are very thin and short.  I use volumizing shampoo and conditioner on my hair, and volumizing mascara.  I think the mascara only makes me look like a Kewpie doll.  I hate seeing the hair in my bathroom sink, and on my keyboard at work.  Some have far more substantial hair loss, so in that regard I'm lucky, but doesn't keep me from worrying I will be in that category at some point.
Posted 3/2/2009 6:05 AM (GMT 0)
My daughter(10) was diagnose in August and was put on prednisone and plaquenil in September and we started to see hairloss in November. After we freaked out and tried to find the reasons why and things that could be done to stop it.

In this time frame we saw the rheumy once and he sent us to the dermatologist---who put her on OLUX (foam steroid for hairloss) After about 3 week we saw the hairloss starting to slow down...(but at this same time she was out of school for Christmas break) I had read somewhere about the fluroscent lighting causing problems so it was in the back of my head when the hairloss stopped during the break BUT IT COULD HAVE BEEN THE OLUX 2. 

I didn't know but when she went back to school after about a week her hair started to fall out again!!!!!!!!!!! So we were able to get UV light filters for her classroom lights and we have had NO MORE HAIRLOSS I took her off the OLUX and she has had major hair growth. This would have been since the 3rd week of January.   

So we have determined that she is uv sensitive the sad thing is that the dermatologist never even talked to us about fluroscent lighting causing problems.

We LUCKED up and found out by reading the internet and this website.

Are you near fluroscent lighting?  We even took all the "new efficiency" lightbulbs out of our house, we were blasting her with uv rays and didn't even know it.

The headaches have stopped also.

Posted 3/2/2009 10:11 PM (GMT 0)
Hi. I am new here and wanted to start off by asking a stupid question. lol How do you know if there are UV light filters on fluroscent lights. In my office at work there are covers over the lights but how can one tell if they are filtering the UV rays?
Posted 3/2/2009 10:27 PM (GMT 0)
Somehow I thought Biotin (aka Vitamin H or Vitamin B7) was supposed to support hair growth from the insode out. I can see something topical adding volume to existing hair, but what makes the hair that dropped out come back? Grab it off the brush & use super glue??!!
Posted 3/3/2009 2:35 AM (GMT 0)

Hi Katelexanna - Wow, that is really interesting!  I did a little reading up on the flourescents because I am affected by them also, and when my husband wanted to replace the regular bulbs with the energy efficient, I said No Way!!

I hope your daughter is wearing a good sunblock everyday (indoors and out).  I found info about that on Lupus.org also- there are a couple of webchats on this subject.  Also - the Plaquenil makes you more sun/light sensitive - something I just found out (the hard way).   My rheumie never mentioned it either.  Good for you for paying attention and figuring it all out!

Lucy

Posted 3/3/2009 2:37 AM (GMT 0)

Hi Desert Sky - good question!  I hope someone has an answer.

Lucy

Posted 3/4/2009 5:15 AM (GMT 0)
We attend a Lupus Support Group and when I spoke to the leader about my concerns on the fluroscent lighting, she told me that she had to change all the lights in her office(covering them with sleeve filters) and she could see a major difference in her lupus.

From the information that I have been able to collect...the fluroscent lights found like in classrooms have the plastic filter cover which only holds back ~40% of the uv rays but when you get the plastic sleeves that actually go over the lightbulb themselves they hold back ~98%.

Big Difference!!!

We noticed within days that Anna was no longer lossing major hair. The top of her head was so thin!!! But you cannot even see evidence of hairloss now and it has again only been since mid-January. She has like 2 inch growth all over the place!!!

I honestly believe that it was the filters that stopped it and not the medicine she was put on because the only time we noticed the slowing of the hairloss was when she was on the 2-week break and after the filters were installed.

You can see major difference in the classroom also if you look in her room and the class next to them there is a major glare in the class without the filters.

Hope this helps...

I also put her on the biotin vitamin also and we have seen her nails growing stonger so I would assume that it is helping with her hair also.

Posted 3/4/2009 6:12 PM (GMT 0)
Thanks, Katelexanna - that's great information.  Did you find the plastic sleeves online? 

Posted 3/5/2009 3:35 PM (GMT 0)
I actually was able to purchase them through the Lupus Support Group in Pensacola that we attend.
They were $5 a piece although they do get them at a discount.
Do you have a support group near you?
Posted 3/5/2009 8:30 PM (GMT 0)

I'm about an hour's drive away from a support group.  I think it's great information for those who are in the workplace/schools.  I seem to be one of those who is pretty sensitive.  I've asked about and wondered how much of the UVA/UVB slipped past the standard light covers and nobody ever seemed to know.   So it's a good reminder to check with a local support group chapter with questions and concerns that are not readily addressed elsewhere.   And, of course - this forum manages to come through in a zillion different ways.  It sometimes amazes me how little information seems to come from the rheumatologists.

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