Lupus and hair loss

[estpem]

Hello. I have lupus and it is progressively getting worse. I have now started to lose my hair and this feels like the final kick in the teeth. Is there anything that I can do? Any meds that will help? I am due to have rituximab.

[Mpsandhu1001]

The first time this happened to me was about 3 years ago.. 75%of my hair fell out, this was so depressing.. I started putting coconut oil in my hair almost every night before bed.. my hair came back more thicker than before.. RA specialist put my on immune suppressants 2 months ago now my hair is falling out again.. just a vicious cycle.. but it does come back.. just sucks.. get your iron checked just eat really healthy more veggies and fruits the better.. hope this helps..

[GERY in reply to Mpsandhu1001]

hi. Thank you for suggesting coconut oil and I will try it. I have had this problem since my late twenties. it would stop & start it worried me a lot losing my hair but now I am 75 stopped worrying about hair loss IT IS THE HORRENDOUS ITCHING THAT I FIND UNBEARABLE. This flare started 6 years ago after a long time in remission. I hope you find a long term solution for your hair loss

[Bakbre]

Hello there

This happened to me as well - in fact I think it happens to most sufferers at some time or other.

It was the meds that affected my hair - mostly Hydroxychloroquine but then other immune suppresants were added and that aggravated it as well. I had my first Rituximab in December and my Rheumy halved my other medication (only 1 tablet of Hydroxy a day now & 2 Lefludomide) so much so that I feel better now than I have for a long time and my hair has come back and is getting thicker everyday. I blame the meds not the illness!

I hope Rituximab works just as well for you - hang on in there and it will come back.

[estpem]

Thank you. Just woke up to get more handfuls of hair coming out. I see my rheumy today so will see what he says. Been on hydroxychloroquine for years. Maybe too long?

[Chanpreet_Walia LUPUS UK]

Hi Estpem,

We published a blog article on ‘coping with hair loss’ which contains helpful tips and information which I hope will be of help to you: lupusuk.org.uk/coping-with-...

You may also like to read our blog post on ‘lupus hair loss and wigs’ here: lupusuk.org.uk/hair-loss-wigs/

[estpem in reply to Chanpreet_Walia]

Thank you so much. I will take a look. Waiting for bilateral knee and hip replacements so currently very disabled. This is the last thing I need. I am so down at the moment...

[Chanpreet_Walia LUPUS UK in reply to estpem]

You're welcome.

I am sorry to hear that, would you like someone to speak to?

I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail]

[estpem in reply to Chanpreet_Walia]

Thank you. Yes, I will email you. Thanks again.

[chrisj]

Hi - I was losing my hair before SLE was diagnosed. I tried to tell my gp I was finding hair on my pillow in the mornings on waking but she insisted it was normal. No it wasnt and when I was finally sent off by a locum for bloods, the result was mild lupus. My gps had been treating me for undiagnosed RA

The hospital put me on plaquenil straight away and slow but sure some symptoms eased, including hair loss. My hair is thinner than it used to be and I blame my gp as it hasnt thickened up again. Plaquenil did it for me. 13 years on and I'm still taking it, wouldnt be without it

[0EmilyWanamaker0]

Hi estpem,

A couple years ago my hair started to fall out, and at 13, that wasn't exactly a joyous time for me. 6 months ago I got a nice bald spot on my scalp. I got my hair cut sort to try to conceal it. My hair has gone from thick and luxurious, to thin and weak. I've started taking biotin with my nice glob of pills each day and it has helped me a bit. I've also stopped blowdrying my hair. My hair has started to thicken up a bit again. Maybe get some pills that contain biotin, and give up blowdrying your hair. (If you do it.) If you find some other way to combat hair loss, I'd absolutely love to here what works for you.