Hair loss

[Doreen2014]

I have been suffering from hair loss and thinning

Any tips or products to use to help

Thank you

[Paul_Howard Partner LUPUS UK]

Hi Doreen2014 ,

We wrote an article for our blog a few months ago which compiled information and tips for hair loss. You can read it here - lupusuk.org.uk/coping-with-...

[Doreen2014 in reply to Paul_Howard]

Thank you for this information

I was wondering if it's still safe to have my hair coloured

Also find my scalp is itchy .

[Paul_Howard Partner LUPUS UK in reply to Doreen2014]

Hi Doreen2014 . People with lupus are generally advised to avoid using hair colouring because the chemicals can cause a strong reaction, which they may be at an increased risk of. It is best to speak to your consultant for their advice on your personal case.

If your doctor thinks that it is OK for you, please remember that hair colouring agents should not be used on damaged skin and if possible, you should avoid those which contain strong chemicals. Always ensure that you do a small patch test on an area of skin first to try and avoid severe reactions and follow the instructions carefully.

[X01WOOG in reply to Paul_Howard]

Do you take anything for dry mouth? I took a pill for dry mouth which helped a lot; however, it made my hair fall out big time! I called my pharmacy and asked them if I was taking anything which would make my hair fall out and they gave me the info on that medication. I quit taking it and my hair was on my head and not on the pillow and my clothes!! Yes, it is thinning but not anything like it was!

[Doreen2014]

Once again thank you for reply.

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣👣

Hi Doreen;

I have lost all of my body hair from my neck down. I am a guy so somewhat uncomfortable at doctors etc. I have no hair under my arms, chest, legs, feet, and yes I have no hair in private areas either. I have had no hair loss on my head.

It is odd but with lupus nothing is odd. To answer your question, I have found nothing to prevent it nor have I found anything for it to come back. Lupus may have damaged the hair follicles and it may never come back. My wife says she wished she had the loss of hair not to have to shave but, not because of a medical issue like lupus.

Also because of lupus I have had to go barefoot for the last 2 years, due to rashes/blister on my feet, especially my right foot.

Sorry I didn't help you any.

I do hope you can find answers or something that will help!

👣👣👣👣👣Tiras👣👣👣👣👣👣

[Terrier_Lady]

Hi, I too have terrible hair loss from lupus. It's always worse when I'm flaring up badly. Before I was receiving proper treatment I had a thin patch right at the front of my hairline and all the rest was getting so thin. I went on benlysta infusions and my hair started to grow back in but still not like it was and I still lost a lot. Now I've noticed I've lost most of my body hair, like I don't shave for weeks because it either doesn't grow or what does is super fine and sparse. So weird! I've been going thru a spell of high disease activity and my hair is falling out like crazy again, starting to see my scalp in areas again. I started using Nature Gate Biotin shampoo and conditioner and it's made my hair feel a lot thicker and my scalp feel better. Don't know if it is helping it grow back or just feel like there is more of it. I tried it because others with lupus said it helped their hair loss. The other thing is yes I think you should quit coloring your hair. I was a hair stylist before I had to stop working and I believe the chemicals do damage hair follicles and cause greater hair loss. There are also cases of hairstylist getting the drug induced form of lupus from hair color. That was one of the questions I was asked about when I got diagnosed. If I wore gloves and had my symptoms started before I did that profession. Which yes it had so the color didn't cause my SLE but I do think it might have contributed to making it worse. Since they think it's a combo of genetics and toxins that cause lupus I think it's best to stay away from anything that may be toxins to our system and we are so sensitive to things. That just my thoughts on hair coloring. I know because of lack of study, there isn't any proof so a lot of Drs say it should be fine, but I noticed my scalp feels a little funny after I would color, so I stopped completely. Hope these suggestions help you.

[Doreen2014 in reply to Terrier_Lady]

Thank you for your suggestions and for replying

I will certainly look up the shampoo you mentioned on line

It's horrible to see your hair falling out and thinning

GP not sure if it is my Lupus causing it or one of my drugs .

I hope you keep well and thanks again xx

[Footygirl]

Hi Doreen

My hair thinned dramatically from the front which meant that any overhead light reflected off my scalp, like a lighthouse beacon!

I saw John Frieda Luxurious Volume shampoo on tv. I bought the tiny holiday tube first and LOVE it. I can no longer see my scalp through my hair and my hair feels thicker. Granted a wash it one day earlier, but I will take that to lose the glare!

It also cured my itchy scalp.

Hope it works for you

Love

⚽️

[Wendy39]

Hello. Yes, I can relate to your post. I have SCLE, so skin problems and sun sensitivity are big issues for me.

Hair issues have been going on with me since approx 2013. I had hair loss and thinning at the time of my diagnosis. It has been from the two sides, from forehead and then back through the top of my head. Luckily for me I have a just off centre parting and very thick hair to start with, so the top hair has covered the thin bits on both sides - hope that makes sense. But I also have suffered small bald patches. I guess the size of a 5p piece. These have worried me the most. I found it scary, I guess your hair is very important to your identity as a woman. My hair became very brittle too. So I had wispy bits sticking out everywhere and then when some of it regrew it stuck out at the top of my head. I had my hair cut shorter, to try to thicken it up and then have grown it shoulder length again, over the 2/3 years since diagnosis.

I had to stop dying my hair in 2011/2012, as I had a very sore angry rash at the nape of my neck too. So no hair dye for more than 4 years and that has helped how my hair feels. No brittle hair and it's softer. I just think us lupies have enough going on with skin and hair to damage ourselves further with a chemical dye.

The dermy that I saw at first told me that my hair follicles had been permanently damaged by the lupus and that it might not all grow back. He was right. I do have very obvious (to me) thin bits where it hasn't grown back. But like I said I have managed to hide this from others.

He gave me dermovate which I use if I notice a small bald bit coming. That does seem to work. To be honest, the betnovate scalp application doesn't seem to do much for me. I can use it again and again and no real improvement.

I have tried shampoos from Holland and Barrett and Body Shop, but they don't really make much difference and I'm back to normal shampoo, mainly Pantene.

To be honest, my rash on the nape of my neck and hair loss problems have been the best when the systemic disease is under control by medication. The hydroxy took the edge off for a while (although rash never went away) but then in the last year or so the flares and fatigue etc have got worse and worse. I recently had a 5 week course of steroids and the rash at the nape of my neck disappeared completely and I had no hair loss/thinning. The effect of these is wearing off and I have the rash back at the nape of my neck and a new 5p piece size bald patch. I have started MMF (Mycophenolate Mofetil recently and I am hoping that will control all of my symptoms better.

I will be wearing my hat more often too - as the sun will damage my hair and skin etc. Not that I have to worry about that today - it's like winter and pouring with rain!

It's a constant learning curve and always something new to learn about ourselves and our condition. I love this site, as it helps so much, in many ways. I hope you find something that helps you. Best wishes. Wendy

[Doreen2014 in reply to Wendy39]

That you Wendy for all the information

The Dr is now wondering if it is a medication I'm on that is causing the hair loss so going to have a period off it and see if that helps

Doreen x

[Wendy39 in reply to Doreen2014]

Good luck! So much is trial and error!

[Doreen2014 in reply to Wendy39]

Yes it sure is x