Hair loss!

I have struggled with hair loss for years since my Lupus diagnosis, but managed to grow it back after one of my friends told me to use some hair treatment which she had used. For more than two years now my hair was thick and manageable. I was having bits come out but not noticeably as before.

Two months ago my hair started falling out again in big chunks. I am so disappointed after trying so hard to maintain my hair healthy. I'm so so so angry coz I thought now one thing out of a thousand is going on well! That's lupus right?! No doubt about that! I guess i got excited too soon! Anyway I had 2 years of good hair lol. Only today whilst washing my hair I had a big chuck in on my comb! I haven't changed my diet or the hair products.

Anyway that's how this (demon within) lupus attacks!

17 Replies

  • Hi there,

    I'm really sorry to hear about your hair loss and I understand how upsetting it is, having lost my hair through both chemotherapy and alopecia. We, as women, are very attached to our hair! It's infuriating when lupus not only robs us of our social lives, our relationships and control over what we choose to do with our lives, but also our self confidence. The latter is one of the hardest ones to accept, for me, anyways. I don't know if this will help in any way, but I use Alpecin caffeine shampoo to reduce the amount of hair loss and to make my hair fuller and bouncier. It helps me, so it might help you. I really hope you have much better days in the near future, and if you want to talk to a Lupie with 15 years of this crappy illness under her belt - just send me a message.

    Sending hugs,

    Suzy x

  • Thanks Suzy, you made me smile knowing I'm not alone. I will definitely try the alpecin shampoo. Thanks very much for the comforting words. Take care and keep on keeping on. I will keep in touch and let you know how it goes.


  • did you know low stomach acid can cause hair loss bec we don't absorb nutrients....

    I thought it was too simplistic but I got serious and started takig either hci with pepsin before protein meals or enzymes with other meals and after a month...the last hair loss...

    I read in a article about this and it is really something to think about..bad digestion is bad for health and hair....and organs etc.....

  • Hello jacrjar, please can you tell me where I can get hci with pepsin and enzymes. What enzymes do you take? And what is is hci with pepsin? I'm desperate to help my elderly mum who has lots of hairloss and is suffering with depression. Glad it's helped you. Many thanks.

  • I would try BRAGGS APPLE CIDAR VINEGAR 2 tbsp. or 1 to start out with with a little water and drink with a straw to avoid teeth area and it makes it go down easier BEFORE EVERY has to be braggs apple cidar vinegar...dr told me about that...I sent you a message about wondering if she has low d3...etc...

  • Thank you jacrjacr, I did not know about this. I will look into it and try it. Thank so much. X

  • Hi Pipido, sorry to hear of your recurring hairloss. I also have this problem. I know I'm going through a bad hairloss period when my scalp starts to itch, I go to the itchy area & there it is, hair coming out! My dermatologist gave me a foam to try. It's called Clarelux 500. I use it like a hair mouse. I have some hair regrowth on my hair line & the itching stopped. I got a bit to confident & stopped using it...& yes the itching & hairloss came bk. So I've started using it again yesterday. Hairloss is one of the most miserable & worrying things to tolerate. Hope you find something to help

  • Hi smudge1980

    Thanks for the info. That's exactly what is happening. Now I know if I feel itchy then the hair just comes off. I will make along to see my dermatologist and see if I can get that to try. Thank you . X

  • that happened to me too....and it would get hot too....I would sometimes put a bag of frozen peas on my head after I washed my hair...then I mixed two raw eggs with olive oil and coconut oil and starting doing these mask once a week before washing my hairand I haven't had the itching or the hotness since.....the egg is loaded with amino acids good for the scalp....just a idea...I always think it is combination of many things causing hair loss....dr also told me to do fish oil 2 x a day, flaxseed oil and vit e capsules every day for moisture taking internally...I also avoid all sulfate shampoos.

  • Your welcome pipido. Hope it works for you. It doesn't work over night, but after a few uses you'll hopefully notice your not itching etc.

  • I'm so sorry to hear you are having issues again. Maybe they will be temporary, I will pray that is the case. Please share what you were using that worked for a while. Thanks Teresa

  • Thank you for the message. I use T444Z hair good and Jeba and they have been ok all these years but now seems not. I hope it's temporary as you say. Thanks and take care .


  • Hi Pipido36,

    We have a blog article about hair loss in lupus which includes loads of tips and advice from people with the condition. You may find it helpful to give it a read -

    Wishing you all the best!

  • Hi Prisca,

    There will always be someone here who is going through the same thing as you, so please don't suffer in silence. I really hope your hair loss stops and you have no further problems with it. It's sometimes hard to know if it's the illness or side effects from the medications.

    Please do let me know how you get on. Wishing you peace and love,


  • Hi Suzy

    I bought alpecin and hci, and have started using them. Fingers crossed hopefully this will help! I will keep you informed on how it goes. I hope it gets better.

    Take care


  • I had the same experience too. Im having hairloss, then after I got medications it stopped. Then I got hairloss again even though I didnt change medication. Ive tried everything but it didnt seem to work. I heard people also use minoxidil but some people say that it is not gonna work for lupus. Im still finding a way with this hairloss

  • Thanks for the reply. I am a still using apron and so far so good. The itching has gone down and the hair loss still there. I hope it will get better.

    Take care. X

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