Hair loss and thinning problem

Hi,i am facing a lot of problem with my hair.i am sure its a common problem for sle patient.but it makes me feel awkward to go outside cause by born i have a beautiful ,silky hair.but nowdays it looks rough and thin also.there is no silkness also.i want to know how do you people cope with this problem?i am really depreesed.when i go outside with my friend i can't be able to style my hair or open it.also losing hair everyday in a disguisting way.i know i can't get my beautiful hair back but i just want that my hair became thick nd silky again.

so if u people know how to manage with hairloss problem and how to get thick hair please suggest me would be great help for me.

12 Replies

  • Hi ava97,

    We published a blog article earlier year which discussed hair loss in lupus and it includes loads of tips from people with experience of it. You can read the article at

  • Thankks..paul,for advice to read the article .hope so i wiil get my answer in that article.i have one more's a girlish question but i don't know how to say. does it happen with all sle patient that they face some hormonal changes?

  • Hi ava97,

    What sort of hormonal changes are you referring to? Are you asking about how lupus may affect the hormones, or how the hormones may affect lupus?

  • Yes I want to know how lupus may affect the hormones.i think i am losing my period.before my sickness i used to have periods for about 3 days i know its really less cause i am 18 only.but in our country girls usually start their periods in 10 to 13.but first month of my diagonising by lupus i got my periods late.And that didn't stay for 1 days.after one month i got my periods in time bt even that time it was really insufficient.this month i got it in time and stayed for 1 day.i don't know if i am loosing it? or is it beacuse of my lupus ?or is it common with sle patient cause i am taking 25 mg steriods.does streiod reduce periods?i have asked my doctor about this he told me it will be normal after few months.If this hsppen than i am okay with it.but for lupus if i will lose my period ? I am really tensed.Mayb u don't know but in our country lupus patient treats negleted.she is a curse for anyone"s life but my family look after me carefully and love me also .Hope you understand what i am saying cause i am unmarried girl and in our society doctor forbide us not to tell about this problem even not in marriage proposal come.we are not developed country so we have to face a lot of problems and lot of people already talk about my body shaming.but i am happy i know i have to live like this way but kindly can u tell me about my period problem?

  • Here is some information from 'The Lupus Encyclopedia' by Donald E Thomas Jr, about how lupus can affect your period;

    "It is not uncommon for women who have SLE to have irregular menstrual cycles. These irregularities primarily occur when their SLE is more active and is manifested by changes in how often they menstruate, how long the menstrual cycles last, and how much menstrual flow they have. The exact reason for these changes is not know, but it may be related to the stress the body is going through during lupus flares. When SLE is less active, the menstrual cycles generally tend to be more normal."

  • thanks a lot.actually i thought i am loosing i get nervous.oooh will this harm my ovam?

  • Hi ava97,

    I have not seen any information which suggests that lupus can harm the ovum, but some lupus treatments can potentially affect fertility and extra planning needs to be done when considering pregnancy. You can read more about this in our booklet here -

  • Hi Ava,

    yeah I am having the same problem, I wrote about it recently and got loads of great supportive replies - thanks everyone!

    I also used to have thick silky hair and people even commented on it and its amazing how it has gone so dry and brittle it has gone now. I used to wash my hair everyday and now I haven't washed it for over a month which I think has improved the dryness a little bit.

    I lost a lot of hair when I had a flare as a child, but it grew back really thick and nice after that.

    I don't think there is anything you can do to get the hair back until it stops falling out but I have been advised NOT to use any sort of hair regrowth treatments or products as these are more likely to make it worse rather than better.

    All I can say is I totally understand what you're going through. I'm dealing with it by having a cry and feeling sorry for myself when I feel depressed about it and then having a laugh a joke about it when I'm in a better mood and remind myself that the quickest way for my hair to get better is to get the lupus under control!

  • hi emily00

    thanks for your suggestion...actually i am new to this side and newer for lupus .i am taking medicine for about 3 i am noticing that in three months my hair almost lost and it is rough and thin .just like u my hair beacame thin so i want to knw how u manage this thinning problem?which supplementery have u used?cause my doctor doesn't seem to be interested with my hair.just beacuse some bald problems in my hair nd front parts of my head lost its in that i visited to a skin doctor but u know he gave me some medicine which created much problems.cause the first sign of my lupus was hairfall and bald problem in my middle head and front i want to know what i should do for getting my hair back..and how long time it has taken for u to get back normal hair ?

  • Hi ava97,

    My hair started to fall out at the front on both sides so I could part my hair to hide it and then my hair started to go thin so I had hair extensions to make my hair look the way it did before. My hair is so thin now that my hairdresser advised I shouldn't have the extensions in anymore as my own hair couldn't cover the extensions.

    Now I just wear a wig for going out and most people thinks it's my own hair.

  • Hair loss was the first major sign of lupus for me, too. It really, really freaked me out, so I understand how frustrating it is. As per tips? For a while I got away with just a ponytail to cover the back bald spots but then started losing hair by my ears, which showed when I pulled up my hair. I got good using bandanas for that "rockabilly" look, as it would cover the area by my ears. I also headbands and ungodly amounts of hair clips to twist what's there over the thin spots.

    A few months into treatment, the bald spots are gone, but the hair is ridiculously thin. It IS growing back, just so very slowly. I haven't found anything that makes the hair grow back faster, but I did decided to go with a chin length haircut, which oddly enough helped hide the thinning spots.

    For many of us, losing our hair is a real blow to our self-esteem. You are so not alone in this.

  • thanks for sharing your experience.i am new to all of this so it just make me know it is not possible to expect for a 18 year girl to adjust this thinnig hair problem.

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