View Full Version : Hello, New Member

01-22-2009, 08:11 PM
:) I'm new. From PA. Dx 5 years ago. Upset once again my hair is falling out!!!!

01-22-2009, 08:21 PM
Is anyone there, anyone?????????????????

01-22-2009, 11:26 PM

Hi...welcoming you with a big hug. We are here. I am positive because you posted on a 'Sticky' thread your post has gotten overlooked. Try posting as a new topic in this same forum..Introduce Yourself.

Roam the forums, jump into any conversation...everyone is so friendly, caring..kind and understanding. Many new friends to meet...

Hair falling out is upsetting..in the midst of a flare? Sometimes hair falling out is an indication we are about to start a flare. Changed anything in your routine..more stress? Changed drugs? Not keeping a reserve of energy?

Cold in PA? Here in South Carolina it has been dipping below freezing...

Welcome again and see you about the forum....

Be well, keep well...enjoy the day...

01-22-2009, 11:34 PM
Hi Kristina,

I'm here.....

I'm sorry no one has responded to you yet. I just caught your post here. I was out this evening at a drama performance at my daughter's school.

Welcome to this site. :) I'm certain others will be along as soon as they're able.

I'm so sorry about your hair. I went through that too and it can be very upsetting. I remember the shock the first time I saw huge chunks of my own hair on my pillow in the morning. I was devastated. :cry: I just wanted to reassure you that it will grow back. It's just one of the many effects of Lupus. Wish I could give you a hug and a shoulder to cry on.

I've had Lupus for 27 years.........things were really rough for me in the first 5 years or so, but I did finally go into a lasting remission and have been stable for about 12 years. Don't give up hope!

This disease can be extremely frustrating, there are so many ups and downs. Do you have a good doctor/Rheumatologist that you see for treatment? That is something that is crucial in managing this illness.

Please know that the rest of the regulars on this forum will be along to welcome you and lend their support soon. There are many here that truly understand what you're going through and will offer their compassion, knowledge, and friendship.

I would love to hear more from you. Please share your story if you would like. I'll check back in the morning.

Meanwhile, I'm sending cyberhugs especially for you........ :D


Lori :P

01-23-2009, 12:02 AM
Welcome kristina! I've dealt with my hair falling recently. I is really depressing to look at my thinning hair but the good news is I'm now noticing it growing back. I hope yours starts to grow back soon!!!

Angel Oliver
01-23-2009, 08:35 AM
Hi and welcome and sending you a gentle hug. I understand how distressing it is when your hair begins to fall out. I had just got my to the right length and it was long and so lovely. My hair fell out.....nearly most of it suddenly.Id wake up with it on the pillow, when i had a bath it was so scary. My hairdresser came round at one point,me screaming and in such distress.As she began trying to help me by treating my hair.....i lost soooooooo much and i saw the horror in her face. By the time she had finished ...i was so upset.So much hair in the bin beside her.
The next day i woke up and went to work.A collegue came with me to thehairdressers as i had decided, it was too upsetting watching my thick long hair getting thinner n patchy. The lot was cut off!!

WOW....it was the best thing i ever did, as much as i hid behind my long hair...i had a trendy cut, shaved at the back (sounds awful but it wasnt) and whispy trendy sort of spikes. Everyone said i looked fab. Now Posh has my hair cut ,but mine was a little shorter.

This year i have begin in fear to grow it again after 4 years of short hair. Yes its falling out again slowly and not as bad.....but you know what.....i always know i can have short hair and feel confident. I must say, i did actually wear scarfs n hats (sparkly of course) and my friends then said i looked so trendy like a popstar. What a boost. So with or without hair there are many things to still look sooooooooooo good.Yes its very traumatic at first.....but i had many styles, hats, scarfs and even a wig a one point which my hairdresser let me borrow for a day.....but that was'nt me.

We are all here for you! When the new site is updated and i learn to put my photos on...i will start with my long hair...then my short hair...to nw how i am growing it again.

I must say...i hid behind my hair thats why i was so distressed. When it was all gone....wow my ears were cold,my neck was cold and i felt naked. I could feel my skull lol. But after a few days i felt so much better.
It does grow back! With me as well it was down to stresses of life.But it grew back.Its only fallen out a bit at the front.....but you know what...it doesnt matter....so many products out there....know one can see it lol :) My little secret.

So please know we will try and help you and so understand the pain.

Hope i have helped a little.

Angel.xxxxx :)

01-23-2009, 11:06 AM
Hi Kristina,
Welcome to the site. I sent you a personal message and I hope that you come back on and read all the posts to you. I know how you feel about losing your hair. This has happened to me several times over the years. Your hair will grow back in again. I hope that you keep posting.


01-23-2009, 12:05 PM
hello :D



01-23-2009, 05:11 PM
hi kristina,

sorry for the delay in sending you a big welcome. My hair has gone through various times and stages of falling out. Each time, it grows back. I am 56 and still have hair down to my middle back. It is depressing, but it will be ok.

share a smile today

01-23-2009, 05:36 PM
Thanks for responding. I hate to be vein, but I can deal with the joint pain specifically my hips, but if I have to be bald on top of everything else I will go nuts! If you don't mind me asking, what are you on? I take Plaquenil. They have tried to push other meds, but the side effects sound so serious, I won't take them. By the way, I am 38 and was dx 5 years ago.

01-23-2009, 06:57 PM
hi kristina,

i too am plaquenil, also calcium, omega 3, dilaudid for pain, and vitamin b shots each week. I get a Medrol injection every 4 months which is a cortisteroid. I too am resisting other (more serious) drugs. My rheumy says if we can keep the steroids below 20 mg a day, then we can keep the side effects at a minimum.

Don't worry, your hair will grow, and I don't know of anyone who has gone bald. My daughter (31) was bald a couple of years ago while fighting breast cancer, and she was precious....although she did not think so. Her hair is growing back, and is so cute.

Whenever my hair falls out, i have never gotten close to bald, and it always grows back. I have always had thin hair, and have never lost it to the point of it being obvious to others.

hope you have a good night.


01-24-2009, 01:39 AM
Hi kristina,

That is a common problem, my own is starting to grow back. I had my first hairloss about a month ago. Your post reminds me of my reation. I was very frustrated with everything else that we have to deal with. Let alone something like hairloss.

It's like adding insult to injury :P