I saw my Rheumie yesterday and explained that over the past three months or so, smalls groups of hair have been falling out. There are no visible patches but my hair has thinned a great deal in the front area over the past year. She thinks it is related to stress but is sending me to a dermatologist to see if it could be something else. She is also checking my thyroid because it was slightly low a few months ago but when back to the normal range a month later.
Has anyone had problems with thinning hair? I don't think it relates to the Lupus because I'm not running a fever or have any mouth sores. Its just frustrating because I don't want to keep losing any more hair. My hair is extremely fine as it is. Also - I think my brother's hair is thinning in the same front area so it makes me wonder if its just genetic. Ugh.
I, too, have experienced thinning of my hair over the past couple of years. I also have very fine hair, so this is very disconcerting to me. Every time I wash my hair and apply styling gel (to wet hair) with my fingers, I always find at least 5 or 6 hairs in my hand. This happens every time I run my fingers through my hair, but it never used to happen at all 2 years ago.
I very well may have Lupus and I have been wondering myself if it has anything to do with my thinning hair. I haven't been formally diagnosed, but I've had symptoms and a couple of my labs have come back positive for it (Lupus). I'm scheduled to see my rheumatologist soon and I am going to ask him about the hair loss. My GP checked my thyroid function and it came back normal.
I sure hope you find the answers you're looking for. I hope I do too.
Thank you, rkmc. I was dx with Lupus with one Rheumie and then Sjorgrens with another. My current Rheumie has not put a name to it. Now my hair comes out in little clumps like yours. I'm surprised I have any hair left.
Good luck with your new doctor. I hope he or she has some ideas. I haven't received my thyroid results back yet, but I'm sure they are normal, as usual. Do you ever find this frustrating? I wish I could figure what is going on with my body. I just don't want to get any worse.
I have Sjogrens and lupus too and my hair is really bad..thin-especially in the back.its like string. This usually happens when the disease is most active.
Need to get it under control with some immunosuppressants or something. A good rheumy should be able to help..also, would recommend having ALL hormones checked
My doctor thinks its stress related. I really don't agree, so now I have to wait until November to see a dermatologist. I also have Fibromyalgia, so often the lines get blurred. Is it the fibro or is it the "rheumatic condition that may be Lupus"?
I also don't get the traditional joint swelling but instead get flares of bad athralgia. I'm hoping that the Plaquenil will hamper the disease from getting worse, but it seems to be worsening.
I will take your advice about the hormones. Thank you!
I have been in flares and had my hair thin excessively. I never got actual bald patches, it just falls out alot all over the place. I had to start wearing my hair in braids and/or up because it literally left a trail where ever I was. I literally had hand fulls after washing my hair; alot coming out while combing my hair; I had it all over my clothes, all over my bed & pillows; I even had it covering my chair at work. After taking prednisone and plaquenil for a while, the falling out finally stopped. I also lose alot of eyelashes. I have some eye problems (which was diagnosed as dry eye syndrome) so I constantly am moving my eyelid to unstick it from my eyes and when I do that, a bunch of eyelashes always come out. Now over the past year, my eyebrows are disappearing as well. I used to have full, thick eyebrows and now I don't even have any left above the upper outsides, so I have to pencil them in all the time. I have read also that this could be related to thyroid problems, but i've had my TSH tested many times and it came back fine.
I've been on Plaquenil for at least 4 years now and haven't really had my hair thin again but my eyebrows keep falling out. And when I pencil them in, I always get a bunch of eyebrow hair all over the pencil. I also have a bunch of tiny hairs at my top hairline (where the brow meets the hair) that are reallyh short and stick up, and they never seem to grow at all. But I really don't know what causes that and the eyebrows & eyelashes to come out all the time.
Did your hair start to thin after you started the Plaquenil? I read that hair thinning is a side effect of Plaquenil. One of my doctors mentioned that hair thinning is gradual and that when it starts to get bad you notice it. Now I can really notice it in the front. It comes out in little clumps when I pick it out in the morning. Its too thin to brush or comb out. It is on my shirts, pillow cases. I should name by hair brush Chewbacka.
You must be so frustrated. Have you seen a dermatologist? My rheumie has referred me to a dermatologist that I will see in November. My thyroid always comes back normal and I just checked my iron and ferritin. They came back normal, as well. I wonder if your case has advanced to a form of alopoecia(sp?). Also, have you been tested for Sjorgrens? Thank you for sharing your experiences!
No..I had hair falling out/thinning before I started plaquenil. My hair stopped thinning & falling out after I started prednisone & plaquenil, but I was only on pred for 8 months; I've been on plaquenil for several years now and my hair on my head hasn't thinned again (yet). But I still to this day have my eyebrows disappearing and my eyelashed coming out.
I am not aware if i'd ever been tested for alopecia nor sjogren's. I have had many tests over the past several years, though...such as ANA, RF, ESR, CBC, some test for sarcoidosis, TSH, and several others that I cannot remember what they are. My rheum never suggested those 2 conditions to me, though.
I did see an opthalmologist this spring before I lost my regular insurance and was diagnosed with dry eye syndrome, after getting all sorts of eye tests. I know at one point they put some numbing drops in my eyes and I sat there for a while, and another point I had strips of paper or something in my eyes. I think that was testing for the dryness.
I've not been to a dermatologist in years, though. Usually I went to my rheum w/ my symptoms, but the only place he ever referred me to was pain management for other issues unrelated to lupus.
All this info about hair thinning is very interesting to me. I have thinning hair now, it started about a year ago and I first noticed it right in the front next to the hairline. My hair now is thinner all over. The really unusal thing is I have lost all the hair on my legs and underarms. My eyebrows have thinned but are about the same as usual and my eyelashes fell out and thinned but are now back just not as thick as I would like them. Having said all this, I have not been official diagnosed yet with lupus. My rheumy calls it almost lupus. I do have a thyroid problem, but have been treated for it for several years now. I take prednisone for my joint pain. I have checked all my meds for hair loss as a side effect and none of them have it. I am working on several health issues right now but I will keep in mind the info I found here.
I've read that often those with Lupus can also have Sjorgrens. I have also read that alopecia can be a symptom of Lupus. It is good to know this but does not take away the feelings associated with what you see in the mirror, on your hair brush, bathtub, pillow, etc. My rheumie will be back from vacation next week, so I think I willput a call into her.
I haven't had my B12 checked lately, but it was normal less than a year ago. I will mention this to my rheumie. Thank you!
I started noticing the hair loss at the front and kept my bangs. I just read that hair loss can come and go with flares. I have some kind of almost lupus, too. I did read that hair thinning is possible with plaquenil, but more commonly with the immunosuppresent drugs. Hope you find some answers soon.
Thank you, all for sharing and for your ideas. It is very helpful!
I have also read that some get hair thinning with Plaquenil. But in my case, it seemed to have stopped mine; although, maybe it just was a coincidence that it stopped after I started this med. I also took Prednisone at the same time, so don't know if that might have had an effect on stopping my hair loss.
I've been off all lupus meds since I have no insurance and the rheumies here require the non-insured to come in a pay before they'll even schedule an appointment. Bummer for someone who worked more than 30 years, huh?
My fine hair has been thinning over the 9 years since my diagnosis and it's so depressing. I look far more ill than I feel. Wish there was a remedy. Wish, wish, wish!