Is that even possible? There is a spot about the size of the palm of my hand, right at the crown. When I flip my hair over to the other side or wind/motion makes the hair move, I actually feel a tugging, slightly painful sensation. Is this inflammation?
My hair has gotten painfully thin since taking plaquenil. Not thin like hair loss - thin like a baby's, and full of static. It flies around my face and I look like Doc. Brown from the Back to the Future movies! But now I'm terrified this new scalp pain is a sign of future hair loss!
Does anyone else have it? Would it be caused by the SjS or the plaquenil? Should I call my rheummy? Can anything be done? Ideas?
Deb
Hi :)
I would see your doctor incase you have an infection of any kind. May the follicles are inflamed. I've never heard of head pain preceding baldness but I know follicles can get inflamed.
My hairdresser told me to take a zinc supplement to help with thinning hair. I think it helps.
See a doc and tell us how it goes.
Take care - Scottie :)
I've had that.. My hubby laughs at me when I say I feel so bad my hair hurts.. ::)
I don't take plaquenil so I don't think it's that, but I also had it before I ever had SJS symptoms.. Usually it would only last a day or two then it would stop, until the next time..
Hi Deb:
Yes I get this problem. My hair/head will hurt and become quite sensitive.
In my case its inflammation of my scalp and basically comes down to getting another interesting aspect of a flare of Sjogrens if you can believe that. Luckily for me it doesn't happen too often, but I've had that happen at least 10 times now, maybe even more times than that.
I find that after a week to 2 weeks it passes and then the inflammation settles down and things return to normal scalp sensitivity. It doesn't seem to have anything to do with hair loss for me, its just plain inflammation. It will hurt to brush my hair and a couple of times I didn't realize that I had started a scalp flare and unfortunately I had a hair cut appointment when I had this and getting my hair styled was an excrutiating experience.
BTW, I don't take plaquenil, in my case this is strictly caused by Sjs. These days I just grin and bear it until things settle down. NSAIDs seem to help me a bit.
Good luck with this,
Daisy
Yup, I've had that happen two times now (most recently this weekend it started again). On the top of my head. Feels like I have a tight pony tail in my hair. Scary the first time it happened, but usually I just try and think....this too shall pass eventually and then something else will be problematic! I don't find much that helps this, it just comes and goes.
My hair hurts too!
I am not on Plaq. and I too have the thining hair.
It really does hurt but only lasts a few days.
Oh YES, this happens to me. I am not on Plaquenil either. I have UCTD - the diagnosis of Sjogren's isn't confirmed yet - and I've had scalp pain both all over my head and in small patches since the beginning of my illness. It happens occasionally and then disappears without any rhyme or reason. I get the tight sensation like my hair is being pulled back into a tight ponytail too, but then it goes away after an hour or so, only to pop up again some time later. And sometimes it hurts so much to comb my hair or touch my head at all that I avoid doing it.
I don't have thinning or hair loss so I don't think they're connected, but I could be wrong.
Violet
I am on Plaq. My hair is very fine and my SCALP hurts much of the time. If I try to do a finger massage
on my scalp, my scalp is very painful to the touch.
my scalp often hurts at the root of my hair whether I've worn it up or down! This has gone on since I was a kid and I always wondered if it was because my hair is thick and heavy on my scalp. now I do think it's got to do with the SJS. Currently I'm not on Plaquenil.
Gold, it certainly isn't because my hair is thick and heavy on my scalp. I'm surprised my scalp knows I have hair. Fine, thin etc........Lucy
YES!
I have had this several times. Usually it is confined to just half my scalp( from the centre part area over- usually the left side).
I have periods where I loose a lot of hair but it seems to be unrelated. It very much feels like I have burned the scalp or pulled the hair too tight for an extended period.
I have noted it usually occurs( like many of my symptoms!) the two weeks prior to my period. After I would ovulate to just before I menstruate. Hormonal shifts seems to augment any weird things a foot in my body.
Hi Deb, because I have very little hair I wear wigs and belong to a wig support board. Many of the posters, when they are first losing hair complain about pain and an extremely sensitive scalp - eventually the pain goes away. That doesn't mean that you will lose your hair- just wanted to let you know that it actually seems to be a fairly common complaint, even from people with no known medical problems other than hair loss. So there is hope that this pain is temporary.
As for the change of texture of your hair - chalk that up to good old menopause - that fine, cotton candy type hair. :'(
I have had inflamed scalp several times in past years. My hair has thinned considerably, though not necessarily after one of the flares. My dermatologist gave me Luxiq- a steroid mousse to apply to affected areas and I usually have improvement the next day.
Cdb :)
I have that right now! It's weird. And I am on 60mg of prednisone a day, so I don't think I have inflammation anywhere in my body, LOL...maybe it's a nerve thing? I dunno.
Weird.
I'm not on Plaquenil. About a year ago I had some extreme flaring of my scalp when it hurt to rest my head on the pillow. Since then my scalp is tender when I run a brush through it.
I have a few small bald patches and general hair thinning.
Derm. checked me again last month and said just keep using the Clobetasol on tender areas as needed. Which means...she doesn't know.
But yeah, I have that too.
I have the scalp pain often along with a tingling. I'm used to it. Sometimes I notice it when I'm outside running. Other times, it's just there. I used to blame ponytails or clips. But there were other times that it happened and I didn't wear them for awhile. My hair is thin and always has been thin. I have a lot of breakage on my hair. If you look at the shafts of my hair, it looks beaded from the roots to the tip. These beads are weak points causing the breakage. So, I'm not "balding" but you can see the short ends sticking straight up. Sometimes the breakage is worse than other times. I try to be gentle with my hair - use a big comb to comb through after showering, running or any activity that causes wind blown. If I grow it, I pull it back a lot to prevent tangles. Lately I prefer to just keep it short. Always use a good conditioner. Find one what does not weigh it down, but does a nice job keeping the tangles out. No more perms. No more bleaching or lightening. They only tend to burn my scalp anyway.
I get sore/bumps on my scalp periodically too. They are really painful but they go away within two weeks or so.
Thanks for all the input, folks. It's nice to know that I'm not alone. I found an article about hair follicle inflammation on a Lupus site. I wonder if a shampoo for inflammation might help. Something with tea tree oil, etc. I may give it a try.
Deb