Lupus and Hair Loss. : Since I have been diagnosed... - LUPUS UK

LUPUS UK

28,368 members24,518 posts

Lupus and Hair Loss.

SLE-Warrior profile image
SLE-Warrior

Since I have been diagnosed with Lupus from July 2019. I have been on strong steroid medication such as prednisolone and hydroxychloroquine and azathioprine. I have been experiencing hair loss which I think this is occurring because of the steroids and the Lupus. I would really appreciate if anyone could recommend some tips to prevent any further damage. My main question is will my hair eventually grow back?

12 Replies
Hidden profile image
Hidden

Hello,

Lupus itself can be a cause of hair loss!😰

Prednisolone (dosage dependent) can actually bring about hairiness/hirsuitism 😰 (part of Cushing’s syndrome) in all sorts of bodily places...

...and as for MMF this immunosuppressant can cause depigmentation, hair turning white?😰.

I’ve had all three at different times but dosage can be a factor as well as individual reactions to the meds.

Regards

SLE-Warrior profile image
SLE-Warrior in reply to Hidden

Thanks for quick relpy. Have you been dealing with hair loss if so, how have you managed it? I have been considering getting wigs to deal with this issue.

Thank you very much

Hidden profile image
Hidden

Hair loss can be a highly emotional issue. 😥😓

For some who have sudden onset autoimmune drastic hair loss, hair falls out in clumps and never grows back healthily.

Probably due to hair follicles being attacked by one’s own immune system. 😱

Hence a solution may be to shave it all off?...and/or wear a wig?..Or not bother?

It depends on personal preference and how one can handle drastic changes in one’s bodily image?!

I suppose for some personal presentation can be difficult and can take getting use to. It can be therapeutic to tell nearest and dearest as to what is happening.

Regards

Hello

I lost most of my hair in the beginning and like yourself am not sure if it was steroids or lupus.

My rheumatologist at the time wasn’t sure if it would grow back or if it might grow to a certain length and snap.....

Luckily for me it did grow back and it’s been fine since.

I did also buy a wig which was fantastic in the beginning to get me to leave the house again. I know we shouldn’t worry about something like loosing our hair but when it happens 😢 it had more of an effect on me than I thought it would.

Once my hair started growing back I found I sweated a lot with the wig so went for caps instead. Fingers crossed your hair will stop or grow back healthy

Sarah x x

Hidden profile image
Hidden

Wondering whether hair loss is more difficult for women than men? Many men actually go for the “bald” look?🤔...as in some celebrities...

Regards

I only wash my hair twice a week and it’s with a shampoo either with argon oil or castor oil. I often use a dry shampoo. No stress on the scalp. I have curly hair I keep short so I never brush it except with my fingers. I’ve still lost hair. I’m 55 but I still think this one streak of grey isn’t from age.

I did use a rogaine based shampoo and if I start to get thinner again I’ll use it again. It’s just so expensive.

I was bald after brain surgery. My kids freaked out if I put a wig on. (They were younger then.) I really didn’t mind it. Other people did but that’s on them.

Gentle on the scalp!

Doaty

Hi BP27. Azathioprine can cause hair loss. I lost even my armpit hair with the stuff. I don’t take it any more because I had a bad reaction.

I actually haven’t had a haircut in over 2 years because of hair loss. It autolayers itself from falling out and growing back in at different lengths. My hair also turned curly and I don’t know if this is lupus or HCQ.

I alternate and only use shampoo every other day. I use conditioner everyday. Systemic steroids should help it grow back. It took 2-3 mos of HCQ before I saw a diff in my skin and had little hairs sprouting where they once were gone.

I hope the same is true for you. Give it some time maybe?

Thank you everyone for your responses they have every helpful. I am considering shaving my hair or getting a wig but I am nervous about it. I haven't washed my hair in two months because of the physical pain of Lupus. Hopefully it all goes well

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator in reply to SLE-Warrior

Hi BODILYPain27,

You may find our page on lupus hair loss and wigs helpful - lupusuk.org.uk/hair-loss-wigs/

My hair grew back initially for a few years but eventually I lost it and have wigs now for 15 years. You get used to it but it takes time 🙂

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator

Hi BODILYPain27,

Hair loss “alopecia” is commonly experienced by people with lupus. It may be permanent, or not, depending upon the cause. When hair loss is caused by medications the hair should regrow when the treatment is discontinued. We published a blog article on coping with hair loss which you may find helpful to read at lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

I've been diagnosed with lupus 10 years ago. Hair loss was always a problem since then. At one point I lost two thirds of my hair and was considering a wig as well. I have been trying all sort of remedies but only one really helped me - Nioxin. My hairdresser suggested that. You can buy it from hair salons, Amazon, eBay, TKMaxx. I use Series 4 as I have a thin coloured hair. Originally Nioxin was developed for cancer patient who lost their hair after chemo. The only downside of Nioxin is if you stop using it the problem come back. I tried once and was OK for a month then I noticed thinning again. So, I came back to it. I used it 2 times a week. The other thing I would suggested is stop using dry shampoo. It helps a lot as well.

You may also like...