I was diagnosed in October 2020 with Lupus STE, started on prednisone 5mg and two months later plaquenil 200mg once a day.
Hairloss started a month after using this medication, lupus is under control and only one flare in the past 5 month. Rheumatologist and Dermatologist believe it could be telogen effluvium from the medication. But nothing has subsided yet, lost around 40% of my hair. Can anyone give advice if they have continuously used and stayed on this medication if the hairloss stopped??
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Lobos75
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Hey Lobos. Always hard to tell. I felt like things got worse with Plaquenil before they got better. I’d guess that lasted for about 3 months. I did lose a lot of hair and it was quite thinned. I stopped Plaquenil and things got a million times worse so I went back on and stuck with it. My hair, skin and joints are much improved. It took about 6-9 mos to notice a real difference. I used to break out all the time on my forehead as well and that has also abated with Plaquenil.
Hope this helps. It’s always hard to tell what is caused by lupus or the meds. All trial and error. I hope you find answers soon. ❤️xx
Thank you for the response... It's starting to become frustrating trying to figure out if it's the medication or just Lupus. When my Lupus was active and I wasn't taking any medications, I had just minimal. I'm now 5 1/2 months in and it's still a tremendous amount of hairloss... a whole sandwich size bag full a month ( my dermatologist is doing monitoring)
The medication helps, but It's getting too much with the hairloss. I'm just hoping it might slow down atleast or stop.
Dont know but my doctor had me taking 1mg each day of folic acid when i was taking some other medication to prevent hair loss. Not sure if thT woyld work in your case but wirth trying you can take 5mg each day w no problems. Other than that b complex is also an good candidate to supplement.
Hair loss is a feature of a flare. Weaning off the prednisone and onto Plaquenil will be best in the long run. Most side effects are short term; however it takes up to three months to build up in your body so you may not feel all the benefits yet. Stick with it as it is a proven benefit in reducing frequency and severity of flares. If you are sensitive stick with Plaquenil and not the generic. Also check your dose (geared to weight). I take 400mg/day Mon-fri and none on weekends.
Thats really sad that this has to happen. When you started it, did it just continue to have excessive fall every time you washed and brushed it? Did it ever slow?
I think a number of people actually do better in terms of hair loss once they go on plaquenil. Sadly, not the case for me!
Granted, it has been years since I sported a flowing mane, but the hair loss seemed to accelerate with the autoimmune diagnosis and picked up speed with HCQ!
It started with a mat of hair circling the drain after washing my hair....then as the thickness of my hair lessened even more, I would find excessive fine strands in the ol’ hairbrush....now it’s at the point where styling is a comb-over challenge! On the bright side, I no longer have enough hair to clog the drain 😕!
My hair stylist claims my hair seems thicker (well, I did pay for a color job!), but I think she’s just trying to humor me...so she can rack up the big 💵 every 5 weeks!
Anyway, like I said, everyone responds differently. Who knows? You may end up needing a lawn mower for your abundant tresses!
This is every time I wash my hair... that's every three days. I have 5 ziplock full bags of hair. I really think it'll all be gone by this year. Almost sounds like what you are going through 😔
It really is demoralizing to see all that hair going, going, gone...! And my current and former rheumies sniffed disinterestedly whenever I brought up the hair loss effect...all right, I know no one is going to croak from fatal hair loss, but jeez! Hair is our crowning glory...er, it was! And it takes a toll on our self-esteem. It’s the cherry on the cake, ain’t it?
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