View Full Version : Hair falling out

04-23-2009, 02:21 PM
Doesn anyone experience hair loss?
This morning after getting dressed and brusing combing my hair into the fashionable ponytail I always but my hair into my grandmother frowned and proceeded to ask me if my hair was thining on the sides....what gave it away granny...the whitnes of my scalp peeking through or the mass amount of hair found in both my brush and trashcan?
YES...thining and combing out more than usual. My doctor said its from the Prednisone...SURPRISE SUPRISE! I Hate being on the steriod. Currently I am down to 5mg from 30mg. I just want off of this drug...in fact I want off of all the drugs. I want so bad to be in remission and be healthy. I eat fresh veggies/fruits no salt low sugar foods. You would think this would help maintain healthy locks. I know this is so superficial of me but I use to have beautiful flawless skin and hair. NOT ANYMORE. I remember the first time I combed my hair after washing it. My hair came out in mass amounts. I was so distraught and for some reason I kept combing and brushing it in disbelief waiting for the hair to stop coming out.
I stood at the sink looking at myself in the mirror as tears rolled down my cheeks and looking down at the trashcan that now looked as though a small puppy was in it or a Chia pet! I quickly thought...oh well time to buy a wig... A platnium blonde wig with HUGE Jackie O sunglasses. A sight this would have been cause I am African-American!
I want so bad for the side affects of bumps/rashes on my elbows/chest/face and hair loss to go away.
Does anyone else go through the hair loss issue? IF so, do you have any solutions other than a wig?
I love my granny as she has single handedly nursed me back to health but sometimes she points out the obvious like I don't notice these things happening to my body.
Sorry had to vent...I HATE LUPUS...I WANT TO KICK LUPUS in the Butt!:buttkick:

04-24-2009, 10:20 AM
To me, losing my hair was one of the hardest things I went through with my Lupus. I could take the pain and all that came with it but losing my hair just brought me to my knees. I had always had shoulder length or longer hair but it got to a point with my illness to where I had to give up on what little long pieces I had left and just chop it all short. I mean SHORT, like boys hair short. I can't tell you how long I cried over having the nice short hair to go with my wonderful round moonface from the pred. :hissyfit: My doctor attributed it to the pred and my Lupus both. I don't have anything I can say to make it easier but to say it does grow back. I still have a couple "bald" spots where it didn't come back exactly like it was, but I can cover it with combing my hair a certain way. I still lose alot of hair, it seems to be everywhere but I do have a full head of long hair again. I'm sorry you are going through this, just remember hats are your friend! :laugh: Good luck!


04-24-2009, 10:36 AM
I understand how hair is important to ladies. I just want to say that I have seen beautiful Africa-American ladies with no hair and they a beautiful.

I've been thinking about shaving my head as I don't have much hair left. I think I would look real funny with a bald head and a full beard. If I shaved off the beard to match no one would talk to me because I would be so ugly that my boat would sink just to get away from me.

Hair or no hair you are still a beautiful person. Kick that Lupus in the butt.

04-24-2009, 11:17 AM
Oh Grime...you made me laugh with that one... :)

dsunshine....my heart ached when I read your post. Gentle hugs to you.... :hug:

I remember all those feelings so well...I'm not a vain person at all, but there's something about losing our hair that attacks us visciously where it hurts deeply...and like you, the tears rolled down my cheeks at the ugly person I saw looking back at me from the mirror. Especially with those chipmunk cheeks. I rationally knew I wasn't ugly, it's just the way it makes you feel when you see someone that just isn't you...the person that you know you are. It's so hard to accept that a few things, like losing your hair and your cheeks bloating up, can change your outward appearance so drastically. It feels absolutely out of our control...and that's always been so terribly hard to accept for me...not being able to control the many effects of this illness. Having it, and the medications we have to use for it, take over control of our bodies. It's scary, frustrating, makes you angry, makes you sad....just so many emotions. Please know that this is completely normal to feel these things and it's okay to mourn the loss of our hair...doesn't make us vain. Just human. As Grime, eloquently said, YOU ARE VERY BEAUTIFUL! Outside and inside...we know that, without even seeing you. And we'll hate Lupus right along with you...for you. We'll give it 1000 kicks in the butt....one for every strand of hair it steals from you.

In answer to your question, yes, unfortunately many of us have gone through this and felt exactly like you do. But I am proof that you can lose tons of hair and it will come back, even more beautiful than before. Since being in remission, mine has gotten healthier and healthier. I'll pray for the same for you...one day soon, it will be so. If you want some encourgement, and haven't already done so since you joined us, head to the thread in Lauri's Lounge, titled 'The Photo of You..." started by Tobyjug. You can do a Search for it too, using those words. A bunch of us have posted pictures of ourselves. Look for mine, by Rastagirl, and check out the long hair I've been able to grow.

Hang in there, dsunshine. We'll help you through this and always lift you up when you are down. God Loves you exactly the way you are today, right now...and I send you my Love, as well.


Lori :heart:

p.s. For good measure, smile big at yourself in the mirror today, and tell Lupus to go to Hell....

04-24-2009, 11:35 AM
I am sorry for your problems and i also have thinning hair i told my rhuemy that if i lose my hair he would have to treat me for depression besides all the other things. And yes lupus and all the other dieases suck but with Gods help we can make it through. Bonita

04-24-2009, 12:29 PM
hi dsunshine,

you have received such encouragement from other members, and i would just like to ditto what they all said. I also suffer with much thinner hair, but am being stubborn and have not cut mine yet. Lupus has aged me so much, i find it hard to even look in the mirror. Even my grandson questions me as to why i look so old...i just tell him it is because i am old, and we laugh.

thanks for the laugh....your vision of a "platnum blonde wig and big jackie o sunglasses" made me laugh. what a picture that would be, and i don't think it matters what color your skin is, that would be a sight.

so sorry you are having to deal with this, again, i so often wish i could wiggle my nose and all of our sorrows would go away.

04-24-2009, 02:13 PM
Hey dsunshine,

I personally am experiencing A LOT of hair loss. I joked with my fiance that I looked like Benjamin Franklin because there was almost no hair on top but it was really long and thin. I actually this past weekend shaved my head and got a wig. I would recommend this to any woman who is having hair loss issues. I felt immediately liberated and much more beautiful again to have it all gone. I also had a lot of fun picking out a wig and I am planning on getting another one soon. It's so easy because the wigs are already styled for you and you don't have to worry about trying to fix your hair where no one can see the hair loss, which can be difficult. Plus it makes getting ready in the mornings much easier. This might not be the right choice for you, but it definitely was for me. Of course, I am looking forward to having my long, flowing, red locks back, but until then, I am very happy with the wig. I hope this helps you some, and that you are having a good day!


04-26-2009, 11:41 AM
Thank you everyone for your responses and input. I washed my hair yesterday and normal shedding. I will say I am also noticing how hairy I am becoming as well. Facial hair/sideburns/mustache/eyebrows...my sister keeps calling me Oscar the grouch because of my eyebrows. Its like I can't shave tweez fast enough. Although my hair is thinner for now I think the excessive amount of shedding has stopped.
I see my doctor Friday and hopefully I will be tappered from 5mg to 2.5 or less on the prednisone. Just trying my best to get off of these drugs and go into remission
Again thank you all for your encouragement and for sharing your stories with me.