Any guidance would be very much appreciated. My daughter was diagnosed with SLE in Oct last year. Currently being treated with prednisolone (which has been titrated down to 5mg) hydroxychloroquine, methotrexate (injectable). Her joint pains are managed well with the treatment. They only side effect of meds/lupus that we are currently battling with is her hair loss. Her hair is luckily quite long and was initially of a reasonable thickness, however she's literally losing it in chunks everytime we brush it. I am trying to keep it well moisturiser with oil, brushing twice a day to stop knotting, washing twice a week. Any tips/advice will be greatly welcomed!
Thanks in advance!
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Bollywoodmummy
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It’s so painful to watch your children suffer. My daughter was diagnosed last year and just turned 10. She had terrible hair loss after her last flare and it was the one thing that broke me. We have managed to keep her oblivious as she wouldn’t cope at the moment - she loves her hair and luckily it was thick enough that she didn’t notice. I don’t have any tips to stop it falling out. My daughter’s stopped as her condition came under control. However I used rosemary oil and added it to her shampoo as it is really good for hair re-growth. Her hair is thicker after about 6 months but I can’t state it was the Rosemary or not - I just did what I could and doing something was better than nothing.
Thank you so much for taking the time to respond to us. It is so Herat breaking but then you think it will settle with time. Yes I do have a oil too that I add in to her conditioner to help. I think I will switch to a more softer shampoo like baby shampoo maybe.
It's reassuring that your daughter's hair did return to its original thickness sometime after. I guess it's just the active phase which is stressful.
Thank you once again for your message. Means alot xx
It is very likely the methotrexate - how much folic acid is she on? That is essential to mitigate the side effects but even it at full dose may not stop the hair loss I'm afraid. Everyone is a bit different about the amount they need - some are fine with 1mg a day or 5mg once a week, others (adults at least) need 5mg every day The action of the drug is on rapidly dividing cells so it catches the hair roots. Do speak to the doctor if she is on a low dose of folic acid but that may not stop it. I'm afraid you may have to get some help from the paediatric staff to maybe cut it - I was surprised you said luckily it is quite long. that is sometimes not a help.
Thank you for your reaponse.Yes she is on 5mg once weekly of folic acid.
The team have contacted us today informing us her ALTs(liver function test results) are very high therefore we are stopping the methotrexate for 2 weeks and then repeating bloods. I think it's going to be all trial and error and then we are concerned re symptoms returning but will wait and watch.
Yes I did speak to her lupus nurse and she's requested a picture of my daughter's hair brush, which I will send. They only seem to interested if she starts developing big patches.
Yes I agree, because it's longer- she's prob losing more (feels so) but as thickness was decent initially hopefully it won't be as noticeable. Let's see how it goes with omitting the methotrexate for two weeks.
Mine fell out in clumps of several hairs together. The folic acid dose is on the low side really - all my adult friends agree that 5mg daily except methotrexate day made a massive difference for them in terms of side effeccts - not sure about hair though.
It may not be an issue long term if the liver values stay high though.
It's good to read that you are taking practical precautions to help minimise excess hair loss i.e. moisturising your daughter's hair with oil and brushing it to reduce tangling. You may also find that washing her hair once a week rather than twice may help too, when the scalp and hair becomes dry it can lead to an itchy scalp and breakage of the hair.
We published a blog article on coping with hair loss which you may find helpful to read at lupusuk.org.uk/coping-with-....
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I have recently been diagnosed with SLE Lupus
Complete lung function test, recently diagnosed SLE
Methotrexate and hair loss
Methotrexate + hair loss 
DIAGNOSED WITH SLE AND RAYNAUDS PHENOMENON
