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Thread: need advice about hair loss

  1. #11
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    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!

  2. #12
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    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:
    **The next or $ raised WILL be the cure for LUPUS**



    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

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  3. #13
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    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!
    SLE, Raynaud's, Fibro, DDD, Neuralgia, Neuropathy, and so on and on and on....
    Cymbalta, Paxil, Vicodin, Promethazine, Valium, Calcium, Zyrtec

  4. #14
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    Hi,

    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.

    Love
    Angel.xxxx

  5. #15
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    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!!
    Shelly
    SLE, Raynaud's, Fibro, DDD, Neuralgia, Neuropathy, and so on and on and on....
    Cymbalta, Paxil, Vicodin, Promethazine, Valium, Calcium, Zyrtec

  6. #16
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    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 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
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  7. #17
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    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.
    SLE, Raynaud's, Fibro, DDD, Neuralgia, Neuropathy, and so on and on and on....
    Cymbalta, Paxil, Vicodin, Promethazine, Valium, Calcium, Zyrtec

  8. #18
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    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.
    Meds- Prednisone, plaquinel, carbatrol, lisinopril/htcz, citalopram, calcium, folic acid, flexeril, percocet prn

  9. #19
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    Default hi

    Angel waits with her 2 microphones and glitterball ready for the duet

  10. #20
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    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!

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