View Full Version : need advice about hair loss

11-17-2008, 03:00 PM
I have had problems with my scalp for over a year now. When I wash my hair it clogs the drain. I have noticed three small spots of baldness thats not really noticeable to others unless I point then out. I dont know about in the back but I do know that I have three bumps back there since last year that swell sometimes and cause a terrible itch so I probably dont have hair in those areas.
My question is for those who have experienced hair loss. Does it happen slowly or does it all start to fall out suddenly? Is it different dependent on the person or is it a certain pattern in which it happens? Does it grow back or is it lost forever? How do you cope with it?

11-17-2008, 05:33 PM
Awww gentle hugs to ya jaideni

My hair loss has been both gradual and clumpy. How am I coping...I'm not.

Every morning is a challange to get ready to go out the door and feel half way confident. Creative hair styles 101.

11-17-2008, 05:38 PM
Hi jaideni,
I have had problems with hair loss through the years, but my hair does eventually come back in. I hope that this happens for you. I think that it is common with Lupus to have this problem.


11-20-2008, 11:55 AM
Over the past 6 months or so I have lost a substantial amount of hair, the bald spots became noticeable. So noticeable that the headband looks didn't cover them anymore. I wore a wig for a while. The hair started to come back so I went back to the head band look. In the past couple of days or so the hair loss seems worse again. I just don't get it! I wish there some sort a magic pill out there to make our hair grow right back!

11-20-2008, 12:09 PM
Hi Kim,
We all wish there was a majic pill, but unfortunately there isn't any. How long have you been on medication? The medication should help you to get your hair back. I know when I had that problem years ago, I did not think my hair was going to come back in but it did. Hopefully soon you have your hair back in.


11-20-2008, 12:58 PM
Sorry this disease causes so many stupid problems. My hair is really thick right now so the thinning out is only noticeable to me right now and I hope it doesnt get worse but judging by the amount of hair in the drain it might. It looks like someone has been yanking small plugs out my head. My daughter wants to play in it but I scared to let her do it anymore because I can feel the hair coming out of my head. I hate having lupus its already taken so much from me and Im not even as sick as some of the people here starting to feel like im a complainer and that i should be able to shake it off Anyway hope you all are having a good day

11-20-2008, 03:59 PM
:shock: jaideni

Why the heck should you shack off hair loss. We all have enough to cope with ... the hair loss is like yet another slap in the face that we could all do with out.

Complain away, and hugs to ya.

11-20-2008, 04:26 PM

11-21-2008, 10:23 AM
I've been thinking about giving that a try myself Sandra.

I'm well past child baring years, so some of the side effects from it shouldn't be an issue for me.

11-21-2008, 12:14 PM

SLE, during a flare your hair could thin, break off and it will grow back.

My hair thinned from a severe flare last year and did grow back. You can notice the hair growth by the 1/4" or so hairs that are straight up at the roots...looks like fuzz amongst your hair. In the light mine looked like a halo.

If it has a root ball then it is falling out. If there is not root ball then it is breaking off.

With Disoid Lupus, lesions on the scalp causes scarring and hair will not grow back.

Stress also causes hair loss. Medication can cause hair to weaken and break. My sister calls me med-head because my hair breaks.

Thyroid disorders, anemia, Polycystic Ovary Syndrome, hormones.. or the use of certain medications can also cause hair loss in women that is often undiagnosed.

I've read the only drug approved for promoting hair growth in women is Minoxidil.

It's Friday..enjoy the weekend.

01-04-2009, 10:52 AM
:( :( Hi u all, i too have been losing hair for the past 3 years, i am not diagnosed with lupus yet, but i have been experiencing this same problem. At first it was mild, few strands and some wold come off during brushing, but by the 3rd month frm when it started, it was all over the rug, bathroom floor on the back of my jacket, i was became so scared to come my hair or even wash it.

Doctors had put me on calcium and said that it could be stress. Nothing worked. Went to a Dernatologist who put me on steriods, i only took them for 2 weeks but you know surprisingly that helped a bit. Went to another dermatologist which gave me PANTOGAR and ROGAINE. THe pantogar helped strengthen my hair, it wasnt that brittle anymore, and i felt uncomfortable using the rogaine because of the side effects, only used it a few times, still have a half bottle.

At present i am taking nothing, i have noticed that alot of my hair still falling off, i am not aware of it growing back, to me it feels so thin, it was so long and full 3 yrs ago and i miss it. :cry: I dont know if i have lupus, and i dont know if anything else could be causing this loss.

But if it is lupus, i must say that this disease is really a carnivore, it just feeds on everything! :(

01-04-2009, 11:01 AM
My hair falls out more so since taking mtx, it dont really bother me tbh with you i do loose clumps of hair, but at the end of it fighting the nausia is more on my mind than my chuffing hair lol hair loss is common in lupus patients its not the most glamourous of deseases to have really lol ive lost most of my dignity to it too :roll:

01-10-2009, 05:45 PM
I have also been losing quite a bit of hair. I used to have long beautiful hair, I always thought no matter how bad a felt, at least my hair looked good. Then the drain clogged. Draino to the rescue...clogged again. Vacuum clogged. Ugh fine, I will cut it. I just cut off about 8 inches and it's shorter than I have ever had it. It's a blow, but I try to remember things could be worse! So my face looks like it was run over in a sandpaper stampede, and my hair looks like...well..crap. Makeup and a great hat can work wonders!

Angel Oliver
01-11-2009, 05:44 AM

I had very long hair. I always hid behind my hair as it was a trendy style just above my elbow. One day had had my hair in platts and someone asked me why i had a spikey bit at the top.When i looked in the mirror and unplatted my hair, one of the 3 sections fell out in my hand.I was devasted. As the days went on i woke up with hair on my pillow and my bath was so full with my hair. I cried as my hair was who i was. I was so unhappy about how much hair i was losing i made an appointment at the hairdressers. They cut the lot off and i had it as short as posh spice. It was awful cause i could now feel my skull and my ears and neck was cold.
Now 4 years later it was a blessing in disguise. I spend less time on straightening it and i have a trendy very short style sometimes shaving the back.
Last Feb i decided i would try n grow it again. Its at that oh my god i hate it stage now and yes my hair has started to fall out again, but i am not worried as i can always go back to my short style. I have 2 small bald patches at the fringe of all places.......but i know.....in time it will grow back. Its a bit of a shock at first, but you get used to it. Hats are a good way to look trendy n keep warm.I had a hat with 2 platts either side....sexy or what......kept me lovely n warm. Yes its upsetting, but there are lots of ways round it even scarfs. My friend says i always look like a pop star when i dress....shame about the voice (Angel begins to sing...attracting all the local cats)lol. At one point i was going to buy a wig, but they are a bit expensive where i live, so please dont worry....in time it will grow back.


01-11-2009, 09:34 AM
Angel, your story is so sweet and touching! It's true that it's just hair, and there is much you can do. As for singing, we should do a duet!!

01-11-2009, 09:55 AM
It is so hard when we loose our hair :( Women rely on their hair because we are told it makes us beautiful. I think we are all beautiful because of who we are and not what we look like. I had very....very long hair for so long. It would thin out and then I would have lesions on my scalp. It always got better and I was so grateful for that. One day it hit me that there are people who are in far worse condition than me and have no hair and never will. Some of these people are little children. I decided right then and there that I did not need all this hair. I ended up chopping 13 inches off and donating it to Locks of Love. My hair will now make a child feel better :D I have to tell you, it was the most rewarding thing I have ever done and am planning on not cutting it for some time and donating it again :wink:

01-11-2009, 12:22 PM
My friend just shaved her head, due to Lupus, and I thought she looked better than ever. Also, my daughter, 7yrs, is growing her hair out for locks of love, I could not be more proud of her.

01-12-2009, 02:09 AM
I donated 10 inches of my hair to locks of love in november. It felt wonderful. Only downside is my hair falling out more now. I'm happy I got those 2 ponytails cut before it fell out. Now someone besides my carpet and shower drains can use my hair. I'm going back to hats and headbands like after my shunt surgery.

Angel Oliver
01-12-2009, 10:37 AM
Angel waits with her 2 microphones and glitterball ready for the duet :)

the wingless one
01-16-2009, 07:26 PM
Hi jaideni, Last year I had a flare and about 3 months later I started noticing my hair coming out like crazy. I finally brought it up to the doctor and he said that if I noticed that the hair that was coming out had little white bulbs at the scalp end then it was fine and it would grow back. He said when your body goes through a stressful period (like a lupus flare, women who have been pregnant have this too) your hair "cycle" (where your hair grows, falls out and grows back) gets messed up and instead of a small amount of hair falling out at a time, a lot will come out at once. BUT the good news is, it should grow back! The little white bulb is the point that your hair was "shocked" by the stress of your last flare and stopped growing. I also have (had?) really thick hair so the hair loss hasn't been overly noticeable to anyone except me. Hang in there, your hair will come back in!