Hair loss ?

[Cas70]

Is anyone else with Discoid Lupus suffering hair loss? Did Hydroxychloroquine help? Am trying not to panic but my bald patch has spread and I have huge partings now with scalp showing. Not seeing Dermo guy til next month!

[jacrjacr]

i do know some people that had corizone shots that worked in one month in bald spots on the head.....if you have diffuse thinning all over..it is different....have you also checked your ferritin and b12 levels , eating enough protein, and amino acids and omega 3s and vit d3 and making sure your digestion is working well....eliminationg timely /daily and dont have adrenal issues or hypothyroid issues....things my dr suggested as a cause and sudden change in hormones can cause too.....and some medications... I WILL SAY TOPPIX....a powder they sale REALLY HELPS HIDE .....

[Cas70 in reply to jacrjacr]

Thank you so much - I take daily B12 and Vit D but I will discuss with my Derma guy and the immuno one too! Really helps hearing from other sufferers - appreciated.

[Genabena]

Taking the vit D helped with my hair loss tremendously

[Cas70 in reply to Genabena]

Thank you so much I take Vit D and B12 daily but intend to discuss with my Immuno and Dermo Drs - another reply says to get tested to see if I am actually absorbing the Vits. All replies so helpful - thank you so,much.

[Shadows-walker]

Hi I suffered with this for years my hair became so thin and sparse it was awrful, I asked for a vit D test they discovered I don't and wasn't absorbing any the difference in my hair now is amazing I also take folic acid, might be an idea to get it all checked GP can do this for you , I saw a dermatologist and he put me on regain for 4 months £100. Later it didn't work the parting is. Bit sparse still but I think with time it will all come good !

[Cas70]

This is so helpful - I will take it up with Drs on my next visit - they just seem to shrug off the hair loss so it is really helpful to get your reply - I will avoid Regain, thanks. Thank goodness for this website - and all the replies - I don't feel so isolated now.

[Natura]

Again, cold pressed sesame oil on the head for 10 mins to however long you want. Every day if you want. Natural anti inflammatory. My scalp use to itch like crazy, i have some scabs on my head still, but this oil calms the itching. Biotin will help hair growth. It works for me.

[Cas70]

Thank you again. Will start tomorrow - what is Biotin?

[lupusforme]

The same thing happened with me. I began noticing that my scalp was hurting all the time. I initially thought that it was because of my ponytail. However the weeks progressed and eventually the weight of my hair was too unbearable, so I had to cut it off. Long story short, when I went in to the doctor (and this is bad), I told him what was going on and when he parted my hair to see the sores, he literally snatched his hands back away! Anyways, I did receive steroid shots in my scalp and it healed fairly quick. I don't know if it is only me, but beware the injections hurt severely. Please try to get in sooner than later, I waited too long and my hair didn't grow back... Be blessed!

[Tiras]

👣👣👣👣👣👣👣👣👣👣👣👣👣

Hi Cas70;

I have lost all of my body hair, I have absolutely none from neck down to toes and no hair in between. However, I have lost no hair on my head.

Lupus effects us all in different ways but, yet in the same way. I can't explain it!

Hope all is going well!

👣Tiras👣

👣👣👣👣👣👣👣👣👣👣👣 👣The Barefoot Gardener👣

👣👣👣👣👣👣👣👣👣👣👣

[Cas70 in reply to Tiras]

Wow! I could do with that. Awful bloody thing isn't it. I count myself lucky so far - so many symptoms to choose from it's like Pic n Mix! Thanks for reply.

[Paul_Howard Partner LUPUS UK]

Hi Cas70 ,

We wrote an article about hair loss with lots of advice for our blog a few months ago. If you haven't seen it, you may want to take a look - lupusuk.org.uk/coping-with-...

We also have a booklet about skin involvement in lupus which may be of use. You can view and download it from our website at lupusuk.org.uk/wp-content/u...

[Cas70 in reply to Paul_Howard]

Dear Paul - thank you so much for this reply. I am so grateful - the photo of the scalp almost matches mine. Still my immunologist won't confirm it IS Discoid Lupus - I will take the photo plus those of my scalp to next 2 doctors as I find it the most depressing of the symptoms. Nice to know you are there. Cas

[Foggybiddy]

Hi @ + Cas70. I have discoid lupus, along with a medley of other symptoms of SLE, and suffer hairloss. I've been on hydroxy for about 8 months & also had steroid injections into scalp as well as frequent applications of Dermovate. Sorry to say none of this has helped in my case and I'm currently experiencing a very bad phase of falling hair. For me it will not regrow as the lupus is destroying the hair follicle and scarring my scalp. I'm 71 and pretty miffed about this so can well imagine how awful it must be for young people to have this condition! You have my every sympathy. I have symptoms that cause much greater physical pain, but hairloss is the one I hate the most. I'd advise you to try as many complementary therapies suggested by the many experts (fellow sufferers) on this site as they are all so knowledgeable and ready to help. I wish you the very best of luck in finding a way to successfully control the condition. Just because I haven't found a way doesn't mean that you won't. We're all different. GOOD LUCK!