Scarring alopecia DLE

[Foggybiddy]

I would like to know if anyone out there with DLE scarring alopecia has been prescribed anything other than Dermovate and hydroxychloroquin. I have been on both for over seven months now and hairloss no better, in fact now far worse. I don't see the dermatologist again until end Aug and wonder if I should try GP in the meantime. (I was on a short course of steroid tablets initially but not had them since.)

[Paul_Howard Partner LUPUS UK]

Hi Foggybiddy ,

You may want to have a look at our booklet, 'Lupus and the Skin' which includes information about some more possible treatment options. You can view and download it from our website at lupusuk.org.uk/wp-content/u...

[Foggybiddy in reply to Paul_Howard]

Many thanks. This is very useful information.

[Elle-26]

Hello Foggybiddy, I to lost all my hair and was given dermovate plus Hydroxychoroquine ... the Consultant said that the scared parts will not grow back. I also had my bloods checked and found I had no folic acid and extremely low on iron which doesnt help, it was also a hairloss factor. For me the hair loss started three years ago, it fell out in clumps and I finally shaved it all off as it was ending up blocking the bath, in my food, clogging the hoover etc ... it started growing back in clumps but I still shaved it off. When it grew back it was pure white, I ended up also losing my eye brows and lashes, they have started growing back white .. I still have bald patches around my hair line and still get lesions ... I do not know whether it will fall out again .. its just a wait and see sadly .. it is really horrid and so depressing. Since it grew back I keep it short enough as I know heat cause my lesions to break out as Im photosensitive, which irritates my immune system. I would try your GP to check your Iron and folic levels and also ask whether you can get a cream wash for your hair/scalp/skin on prescription ... Best wishes & gentle hugs xxx

[Foggybiddy in reply to Elle-26]

Hi @Ellie-26 Thanks for your reply and I can see you've certainly had an awful experience with this condition, far worse than mine - so far at least. I've just had loads of blood tests and both iron and folic levels ok. Main problem is low B12 and high ferritin, for which I'm referred back to GP. Will see what else she can offer and since checking out the Lupus and the Skin link given above I've discovered that wearing a hat indoors gives almost instant relief from the prickly burning on my scalp which is pretty much constant during a flare. I really hope you'll keep your hair this time. Mine has thinned all over but much worse on top. Very best wishes and gentle hugs to you too xx

[Elle-26 in reply to Foggybiddy]

ps ...to add, I changed all my light bulbs to the old version ( incandescent ) as I noticed the energy bulbs were burning me as the heat hit my head first ... I buy boxes on ebay and they have helped too -x-

[Casimir]

I will be getting transplants in the future. Tattoo perhaps until then. In the public eye, in an externally referanced field. I was considered extremely handsome once, and now this has unhinged my self esteem. Daily practice of loving, acceptance of oneself mandatory. No external cortisoids worked. Perhaps you will be luckier.

[GERY]

HI Fogggybiddy. I have had discoid Lupus from the age of 26 I am now 73. Yes past flares have scarred my scalp about the size of 10p pieces. I was prescribed SYNALAR GEL which is a CORTICOSTSTEROID I had to apply this when the itching started, this was some years ago and did work at that time but now I have a really bad flare of itching and hair loss & it no longer controls the itching or hair loss which just appears in patches. Perhaps you could ask for this steroid gel but it very potent. Sorry I can't be of more help, I am still searching for answers myself

[Silverlady51]

Hi foggybiddy, I've got DLE and scarring alopecia or had☺ I discovered something simple having tried everything, my hair is thicker and scaring gone.... it's drug free and I bought it from Morrison's supermarket, it's called beauty Skin,hair & nails. 45 tablets (1 a day) you can find it in the medicine isle. Good luck

[Foggybiddy in reply to Silverlady51]

Hi Silverlady51 , what a result from a supermarket shop?!! I'll definitely have to find a morrisons & give this product a try. Many thanks for your recommendation.

[Paul_Howard Partner LUPUS UK in reply to Foggybiddy]

Hi Foggybiddy , please discuss any supplements and/or alternative treatments with your doctor before starting them. They can potentially have adverse effects in some conditions such as lupus and can have dangerous interactions with some treatments. Lupus is a very varied condition and what works for one person can be potentially harmful for another.

[Tilcara]

Hi Foggybiddy, so sorry to hear about your hair loss and I know the feeling. I've lost most of my hair from my crown and hairline, in addition to the oral tabs and dermovate that you have been prescribed I was given some additional topical solutions namely - Clarelux, Regaine and etrivex shampoo, thie shampoo does seem to have a calming effect during a flair. I hope all goes well.

[Foggybiddy in reply to Tilcara]

Thanks Tilcara , I'll try this shampoo - anything to calm the effects of a long-running flair!

[Lara4228]

Hi, I too am going through the same thing. I'm from Canada and it seems I can't get proper help. I was diagnosed with Discoid 3 years ago come Aug. 13. I've seen 2 GP's and 3 dermatologists and nothing has helped. I haven't stopped flaring since Feb. 2013. What started out as 2 small patches the size of your thumb nail has now grown to the size of a large orange in diameter and I have 5 of them merging into one. Plus the scarring, and the lesions surrounding my hairline and moving down the front of my ear. In May, my dermatologist told me it is starting to eat through my scalp and creating a hole. Scare the crap out of me!

I have just found this site and holy moly, it is the best one I have seen yet.

I have moved across the country from. The west to the east, I can confirm humidity has helped with crust that forms my lesions.

Now I am waiting to see my original dermatologist to see if meds will help.

Any advice for me to request when I go?

It is so bad it hurts when I shower and if my hair doesn't lie a certain way, it pains my bald spots.

Thanks!

[Foggybiddy in reply to Lara4228]

Hi Lara4228 I too experience pain at hair roots especially if even slightly wind-blown. I now wear a hat whatever the weather is doing & try to leave hair parting wherever it wants because if I try to change it it hurts. It would be useful to ask for clarification from your current dermatologist about the 'eating through your scalp' comments from your previous one. I've never heard of that. Good luck with your next visit & I hope you get some real help.

[Lara4228]

Hi foggybiddy, oh yes the wind! People who know me first thought I as making it up when I told them the wind hurts me. I live in a hat. I very seldom can walk out of the house without one for that reason and esthetically as well. Hair up in a ponytail on the days I wash my hair and in a hat on the off.

I find it most frustrating and I find myself getting so angry, because when I use my lotions and cream on my spots, I have to wash my hair 5-7 before all the greasiness comes out, but it is excruciating to wash.

For others reading this, what have been successful treatmens for you? What is the longest flare you have had with the alopecia?

I do knkw stress is a major trigger for it, but in reality, who can live stress free? I think about how I am going to make dinner and automatically my head itches like I have bugs and then stings.

I am desperate for a winning treatment regime