Frontal Fibrosing Alopecea

I was diagnosed with Lupus SLE due to hair loss similar to frontal Fibrosing alopecea and mouth ulcers. I was put on Hydroxychloroquine 200mg twice a I stopped taking it for a while as I’m sure it was making my hair loss worse but have recently gone back on it as my hair was and is still coming out.

Has anyone had similar side effects taking this drug? It does seem to help with constant mouth ulcers at the moment.

I’m told by my dermatologist and rheumatologist that my hair will never grow back where it is lost. I don’t have any scarring on my head and the rash on my nose is more consistent with Rosacea.

Any advice would be appreciated.

[PMRpro]

Did you put that as the title of your post? Is that your real name?

If so, I suggest you edit it to something more like what your question is to remove your name and report it to HealthUnlocked. We have had a spate of this on my home forum and most people deny having used their user name as the title so it seems to be yet another HU bug and one that is a bit risky if it is going to publicise our names on what is basically social media where everybody has a username.

[Hidden in reply to PMRpro]

ok but I cannot find how to edit my post

[PMRpro in reply to Hidden]

Click on More in the box under your post. That triggers a drop down menu which includes Edit - it takes you back to the page where you wrote your post.

If you can, take a screen shot and report it to HealthUnlocked using Contact under Support which is to be found in the black strapline at the bottom of the page when you scroll all the way down. I know from experience they insist on asking for that when you point out a fault to them.

[Suvi8901]

“Hidden” accounts are mostly/usually deleted accounts either by HU or by original poster?! Strange name if genuine?🥹

Would have thought the HU’s AI algorithm would have disallowed it as a username? But?

[flo_IarFachYrHaf in reply to Suvi8901]

yes does seem to be hidden as in deleted account, I wonder if in trying to sort out editing they deleted their account...

[Tara1_]

I have been prescribed methotrexate. Seems okay but occasionally does make me slightly sick. But hasn't really done anything to help my joints though. Hope this is helpful

[Symone1]

I am going through the same problem, stopped the meds and now hair loss is worst, rashes mouth ulcer. increased. Main triggers are sunlight and stress. Now back on the meds and handling stress better, things are calming down. My hair normally grows back but weak and keeps breaking.

[Dicko2006]

I took this drug for less than a week and became covered in a rash head to toe, including face. Very itchy and uncomfortable. Don’t know if it’s the drug or a Lupus rash. Dr has advised to discontinue medication until rash goes, then try again. I didn’t notice a worsening in hair loss, this has been a constant in my life for about 2 yrs. So frustrating. I’m 45. I still can’t believe this is my life now. Was only diagnosed with ‘mild’ Lupus a month ago.

[Vsully]

I have been taking this medication for over 5years now an have never had this side effect,I did loose some hair after being diagnosed with lupus,but mainly on my legs an under my arms an genital area,but thus has since grown back,so I'm not sure if mine was just through a miracle,but hopefully you will also have yours grow back,im not to sure why you was told differently,maybe it's a different type as I know there are a few different strains of lupus,hope this has help and good luck,fellow warrior 💜