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Discussion Starter · #1 ·
hi all-

I'm experiencing hair loss, and wondered if it's from the lupus or the plaquenil...any thoughts on this?

thanks
 

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I am watching your post kristin, because I am losing my eyebrows and eye lashes - wonderful!

Wondering if it's Plaquenil myself.

Good luck with replies :love:
 

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Discussion Starter · #3 ·
thanks :)

it's so bizarre...so many symptoms - joint and muscle pain, rashes etc, but what really bugs me is the hair loss :(

i got a nice headband on etsy.com (handmade stuff) but who wants to deal with this stuff -- and i'm not really a hat person...
 

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I thought I'd written this post myself! :hehe:

I've been on Plaquinel since June 2006 and have really noticed my hair thinning over the last few months and what the heck happened to my lovely eyelashes!!!! :eek:

Alwin - I'd be happy if it was just my eyebrows as they are too thick and I'm too scared to pluck. Waxing makes them saggy.

I noticed my hair significantly thinner in January when I started flaring so put it down to that but now I think it's the Plaq. I can't do a thing with my hair - a hairband I think would make mine worse as the least thing flattens it.

This morning I tried this:


And I ended up like this:

Hmmm............:grrr:
 

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Hi ladies :)

If it's accompanied by other symptoms of a flare then it is probably the Lupus causing it, at least thats been my experience.

If it isnt accompanied by any other lupus symptoms then it could be the Plaquenil, it is cited as a side effect.

It's worth getting your thyroid checked too as that can cause hair loss, and sometimes docs (and even us ;) )forget to look at other causes for a particular symptom.

What dosage of Plaquenil are you on Kristen? Are you due another appt with your Rheumatologist soon, she may want to adjust your medications or add something if the Plaquenil is not doing the trick?

love
Lily
 

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Thanks for asking this question! I have been on plaquenil for about three weeks and have also noticed hair loss. (was trying to blame all the hair in the shower drain on my DH) I didn't experience hair loss with my flares. Will be asking the Rhuem. about this when I see him next! I hate hats too....but would love to try a long blonde wig out just for fun!
 

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Sigh, I can't blame mine on Plaquinel - I'm not taking any. So far I haven't lost enough for a wig, sort of. Even if I had I couldn't wear one - its far too hot in Florida for a wig. Although you DO make me think about it. It sure would be an easy way to do my hair. :) I wear my hair short and I know that everyone can see my scalp on the sides and if I don't part my hair on the sides, they can see the scalp on the top as well. I just figure, "Oh well". That's me and people have to live with it just like they have to live with my weight and my cane.
 

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i too noticed my hair falling out alot especially in the shower when i started taking plaquenil. but that has stopped after a couple of weeks.
 

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I've never been on Plaquenil (I have refused all rx treatment other than a few nsaids and prednisone for personal reasons) and I have had two bouts with hair loss that were fairly significant.

One was when I was first diagnosed and it fell out and became so thin... but came back just as quickly after the flare ended (luckily)...

The other is now and it's so embarrassing, you can see my scalp in places and I'm only 22...

Someone, somewhere, at some point told me (or I read) that the hair loss comes from inflammation and the hair coming loose from the follicle. I could be making that up though...y a never know...
 

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Discussion Starter · #10 ·
I'm on 400mg of plaquenil

I probably will be talking to my rheumy soon because I just busted out into a major flare yesterday :(

excellent use of smileys loopy loo!
 

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During the years I have lost large portions of my hair many times. Good news is it has always come back. In fact it is thicker than it has ever been. My once perfectly straight limp flyaway hair is now curly too. Don't give up hope. Once your disease is more in control your hair will most likely return also.

Take care,
Lazylegs
 

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Hair loss is a huge symptom of a flare for me- right before I was diagnosed with Lupus, I was losing hair like crazy.

There's nothing like the feeling of seeing your own hair collect in the shower drains while you're shampooing it. It's just awful. :worried:

My rhuem. said that the hair loss is a symptom of Lupus, especially in the "pattern" that I lost it- it was all near towards my part-line and crown, in spots about the size of a nickel.

I'm happy to say that the hair loss has stopped now that I've been on Plaquenil for a few months. I really hope it doesn't start again- I have very thin hair to begin with!

I will also say that the person who invented clip-on hair extensions is a god send. As long as I wore my hair down (not clipped up or back) with the extensions clipped in, my hair still looked healthy and you couldn't see the bald spots. I wouldn't wear the extensions all the time, but mostly when my husband and I would be going out somewhere. If you can get the ones made of human hair, you can curl them and flat iron them just like your own real hair. It made me feel 100% better. :)
 

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My daughter has lupus and the cyclo has caused her to loose all her hair. Last chemo Feb. is coming back but very thin. I have 2 and a possible third autoimmune disease and I am on steriods. My whole head of hair changed, my hair dressers also really noticed it. It started a few years back. My hair is thinner, finer and hair strains are all over the house. I shed worse than any animal. I guess thats why I vacumn so much.

Sharon
 
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