Does the hair loss ever stop? Been on Plaquenil for 3 months and hair isn’t stopping in terms of falling out. Any experience or knowledge on this? Will it really ever stop or is something else amusing this other than SLE?
I've had lupus and discoid lupus for a very long time, the hair loss seems to be just one of those things thats happens, it started about 10 years into my lupus, it has slowed down some, but I'm still losing it and it is not from medications as the doctors first thought, as I take no meds and am still losing my hair. I'm sorry I couldn't be a more help
I think the hair loss thing just happens regardless. guess youre a female, so let's hope it passes quickly like mine did. I'm on too many meds to blame any one or two for this or that. Recently ive gone through three retina surgery s, Glad they skipped Plaquenil and went straight to Methotrexate injections. that seems to help. So Ive kept my hair, but have some kidney involvement. Im just thankful I'm still able to work. Try not to think where you could be ten years down the road!
Mine doesn’t stop either …
Some time is more ,some time is less but it’s always present 
It stops and starts. I’ve just gotten used to it. Wish I had some better news. You can use rogaine and supplement your diet with zinc to help.
The only thing I found to help was soft ice pacs on my scalp at night or whenever lying down to rest.
Your hair can fall out if your lupus is active. When things quiet down it usually stops and grows back in. Mine has fallen out drastically 3x and has grown back each time. It’s frustrtating and sucks but it happens. Short hair cuts are best and don’t tie your hair tight and try to avoid blow dryers/straighteners and excessive brushing as it will cause more hair loss. You should also have your thyroid checked bc this can cause hairloss and its common to have lupus and a thyroid disorder. Ask your doc about tsh test for your thyroid. Good luck
My hair has started falling out. I thought maybe it was the meds, but now I see it’s just another facet to this disease. As if the pain and fatigue were not enough…
Yes, it will stop. It goes in phases for most of us. No problems for many years, then a flare will decide to attack your hair roots rather than some other part of your body. If you search "hair loss" in the upper right corner of this page in the search box, you'll see other discussions about this subject and things that can help. In 30+ years of Lupus, I think I only had 3-4 episodes of hair loss. Possibly soon your immune cells will choose to attack a different part of your body.
Best wishes.
I had the same problem with starting plaquenil. It seems like it lasted about 6 months. I never had bald spots but everytime I washed my hair or combed it, a lot of my hair came out. Today I longer have any hair falling out. I think it just took a long time for my body to adjust to it. My hair is slightly thinner on my left side. But only my hairdresser and I know that. Ive been on plaquenil for 15 years now.
Good luck
In my first year with Lupus I’ve had two prolonged episodes of hair loss. I’ve probably lost 30-40% of the hair on my head. I use Rogaine to keep it in and help it grow back and I use the wonderful Mane n Tail hair moisturizing treatment to make what’s left nice and soft. I’ve been on Plaquenil the whole year.
I do think this most recent episode coincides with the flare I’m experiencing.
I’m really sick of the hair loss
I haven’t taken § for awhile, years at least, the hair is still falling out. I think it’s more the Lupus
I was first diagnosed with discoid Lupus15 years ago which gave me bald spots on my scalp. Then last year I was on Cytoxan a drug used for cancer but I was using it for Lupus. My hair was long, now I barley have hair but it's growing back. My hair loss was due to drugs I was taking for Lupus. Then I took Cyclosporine and started growing a mustache and hair on my face and arms. Be careful with waxing I went straight into a flare after the waxing. The hair loss/growth on face, flare and moon face has changed my attractive appearance for life. I look 10 years older.
Have you tried Biotin? I lost the vast majority of my hair during a major flare last year but it has been growing back slowly thanks to Mane n Tail, Nioxin shampoo, and Biotin supplements. Once it was past 1/2 an inch long I got a pixie cut and it makes my hair look fuller. Not cute on my round face, but at least I don't look quite so bald!