hair loss

[Graystar]

Hi I’m having a lot of hair loss, I recently had an infection and I always seem to lose more hair then, it’s coming out in clumps. Has anyone got any tips? I don’t take any meds for lupus so it’s not that. I don’t use heat appliances on my hair either 😊

[Betty909090]

Is this autoimmune alopecia which is part and parcel of lupus?

Perhaps a medications review is needed so that optimal dosages are taken. Hair generally grows back when lupus is better managed.

[Graystar in reply to Betty909090]

Thank you it seems worse at the moment but then I have had an infection.

[Hamptons]

starburst gummies from Holland& barrett are incredible. I also use a collagen shampoo and conditioner. I also took collagen tablets when my hair loss was very bad. I no longer wrap my hair in a towel and stopped putting my hair in a ponytail. Combing with a large tooth comb as helped as well.

[Graystar in reply to Hamptons]

Thank you I’ll try the collagen shampoo and conditioner and gummies

[MaCoBu]

I take double the recommended dose of Biotin, which seems to help.

[Graystar in reply to MaCoBu]

Thank you I’ll look that up

[Waxed]

I also have hair loss, don't know whether it is meds or lupus. Having a flare up at the moment also have tested posotive for covid this am. Anyway getting back to hair loss I have resorted to buying a cheap wig from shein to see if I could tolerate wearing one. No problem, very light and much better quality than I expected. Just a thought

[Graystar in reply to Waxed]

Thank you, I may need to consider that! I’m going to try some starburst gummies and collagen shampoo and conditioner for now. I’m post menopause too so I know some hair loss is natural. I’ve never lost it in clumps like this before but I’ve had an infection the last two weeks. I’m pretty kind to my hair I don’t use heat appliances much, only a short blast with the hairdryer on a low setting and I use hair oil and leave in conditioner. I use an Afro comb and go with my natural curls. I don’t colour my hair anymore either as that seemed to have an impact. So I’m embracing my gray hair. I’m sure it’s just being unwell recently but obviously I need a boost!

[michaellasmith Administrator]

Hi there Graystar,

Sorry to hear you had an infection recently however, I am hoping you are recovered now?

I have attached a blog article below, which has information and tips for coping with hair loss, I hope you find this useful.

lupusuk.org.uk/coping-with-...

Keep us updated!

All the best,

Michaella

[Graystar in reply to michaellasmith]

Thank you yes I’ve just finished a course of antibiotics and I’m not relapsing like I’ve done in the past, so that’s good! Thank you for sending me the link to the blog. I appreciate it and it confirms I’m doing all the correct things.

Many thanks!

[nada28]

Hello. I also struggled alot with hairloss and losing it in clumps it is very upsetting so I hope you are holding up okay I know it is tough. Mine is growing back now - I took biotin supplements from holland and barrett and also the gummies. I also oiled my hair with rosemary oil and black jamaican castor oil (this is very thick i have curly coarse hair so worked for me and is more tailored for this type of hair - rosemary oil for all hair types) and prayed a lot!!! Sending lots of love xxx

[Graystar in reply to nada28]

Thank you! I lost about half my hair after going through the menopause but that was years ago. It never came back fully but I made some big changes. I don’t colour my hair, I use an Afro comb, allow my natural curls to flourish and I use hair oil and leave in conditioner. I try to only wash it twice a week but I go swimming (although not whilst I’ve been ill) so I need to wash it after a swim. I’m definitely going to give the gummies a go and I’ve already bought some shampoo with collagen in, just haven’t tried it yet. I’m disappointed as I’ve made so many changes and yet despite that still have these clumps of hair falling out. The only other change is that I was eating almond nuts daily but with an infection it’s hard to feel like munching on anything hard. I can’t imagine it’s just due to that either?

[nada28 in reply to Graystar]

it is really frustrating when you are trying everything and it doesnt work I know how you feel it was like that for months for me. I do think infections make hair loss a bit worse so hopefully once you fully recover it will ease a bit. Sometimes you can minimise how it looks with coloured hair sprays or touch ups, I had some from amazon. I know people recommended wigs as well, for me I didn't want to use any because I was in denial and didn't want to accept almost 'defeat' by wearing one, but looking back I don't think it would have been a bad thing to try!

[Graystar in reply to nada28]

Thank you! I did try a coloured hairspray but all the colour got sweated off and ran down my face, I get so hot and sweaty at times, particularly when I’ve been unwell. I did actually research the link between hair loss and infections and there does seem to be a link. The hair loss should taper off once I’m better apparently? Just a worry when it’s so excessive and I’m no longer replacing the hair that I’ve already lost. I’m so prone to infections it’s happening a lot. Hey ho 😊

[Betty909090]

The sad thing about lupus (SLE) is that hair loss is actually due to T lymphocytes (white blood cells) attacking our hair follicles making the roots thin and weak. That’s the primary cause!👆

Eventually the hair falls out. Before my lupus diagnosis without MMF or Prednisolone my scalp hair was falling out in clumps!

However once on specific lupus treatment it grew back but not as thick. Most in the cosmetics and beauty industry recommend this and that cream etc but AUTOIMMUNE Alopecia is as I’ve said part and parcel of lupus.

Hence calming our immune system down and controlling bodily inflammatory processes is important in controlling AI hair loss.

Infection should not affect hair loss🧐!

[Graystar in reply to Betty909090]

Unfortunately that is not the case with me 😏

[SurferGuy]

I too have suddenly begun to lose hair. I have a sneaky suspicion it could be due to reducing my Mycophenolate from 3 tablets a day to 2 a day.

I saw my GP yesterday who's asked for bloods to be done as she thinks it could also be due to lack of iron.

I'll check out the Gummies that have been recommended. Right now I have no idea what these are. May I ask how they work or what the purpose of these are please?

[Graystar]

Hi SurferGuy, Starburst gummies are available at Holland and Barrett or Amazon they help improve hair and nail growth apparently. I need to order some as I haven’t tried them yet. Almond nuts are also good.