View Full Version : Hair loss

09-07-2011, 12:40 PM
I know I have posted on here before about the subject, but now I feel that my hair loss is getting worse. For years I had short hair but about 6 years ago when I started getting sick I decided to let it all grow out, it is longer than I ever thought that it would be, hangs down past my waist. Well it has always tried to fall it but not bad, but here lately it has gotten worse, so bad that my husband has told me that if it keeps up I need to start wearing a hair net. I have a bald spot in the top of my head. We just noticed it yesterday, I can't seem to stop thinking about it. It is almost driving me crazy. My daughter told me she would buy me a wig if it got any worse, I don't think I would like that, just not my style. so what to do.

What do you do when this happens, if anyone else has this problem please let me know how you handle it and what you do to make it better?

09-07-2011, 02:34 PM
I have odd hair loss. My under arms and legs....it just doesnt grow anymore. My rheumy and pulmonologist dont really know what causes it.

09-07-2011, 03:56 PM
I have odd hair loss. My under arms and legs....it just doesnt grow anymore. My rheumy and pulmonologist dont really know what causes it.

Hey, underarms and legs would be a blessing for me.lol
Just yesterday I have discovered that I am loosing more hair again. I have had hairloss before I ever started on any meds. After I started several meds, plus MTX, I had almost no hairloss and now that I had to stop MTX, it is starting again.
I don't have any bald spots(yet), but my hair is getting much thinner.
It helps me, when I keep my hair shorter, not real short, but shorter.


09-07-2011, 10:04 PM
Maybe it's being caused by thyroid issues or something on top of the Lupus. My hair was a mess when my thyroid was acting up. It was dry and dull too. I would call my doc and ask who could help me. Hair is so dear to a female.

09-08-2011, 06:25 AM
My Rheumy told me hair loss can happen when the Lupus is more active. I cut my hair very short as I lost so much of it. I found it helpful to buy a ponytail and when I go to events I slick my hair back and put my straight pony tail and it looks really good, I feel a little better when I do wear it even though I know its not my own.

09-08-2011, 06:41 AM
thanks for the posts @ritzbit hair loss on on my legs and under arms that would be great, even though I have never been one to have to shave my legs much cause I have never grown much hair on them, but I would still be grateful for hair not growing there.

I waited so long to grow my hair long I can't give it up and cut it right now and if I do everyone would know that there is something wrong since I have made such a big fuss about my hair, My mom does not know what is wrong with me right now because she is in stage 4 kidney failure, and she would question why I have cut my hair. My mom was losing her hair when I decided to grow it out and thought that if I did ever cut it that I would donate it to the locks of love place because of my mom.

@lovedbyhim I have talked to the dr about it and they are running some test. It could be thyroid it does run in my family severely. If the dr doesn't come up with anything I will mention it the next time I go back.

@chikititalinda I agree that I think when lupus is more active that it will cause hair loss and that is more than likely what is happening to me, I have been in bad flares all summer and this has been more than any other time I have had a flair. but hopefully now that it is starting to cool off maybe my flair will go away or at least get better.

thanks everyone

09-08-2011, 09:38 AM
I think mine might be from a med but I dont know which one. It all stopped growing after I started my meds initially 2 years ago. Havent shaved under my arms once since then. My mom said I should be a deodorant model because I have the perfect under arms for it! LOL

09-12-2011, 06:58 AM
Hi. I had a funeral this morning and tried to out in this black sparkly clip. I got really upset because I realized the last time I wore it was before I was diagnosed and on meds and I had way to much hair to fit into the clip. This morning it just seemed to slip out and couldn't grab enough hair. Sometimes a piece if my hair will end up in my families food and it will be on my sheets and I just don't like it being thin. I buy volumising shampoo and conditioner which kinda helps boost what I've got. I just hate realizing I do actually suffer heaps of the Lupus symptoms where in the first place when i was first diagnosed without realizing I think I thought I will have Lupus but nit suffer from it at all and accepting that I'm forced to is just really hard. Thanks formlistening!

09-12-2011, 11:59 AM
Hair loss occurs in 45 to 55% of Lupus patients. It can fall out all over the head or in patches. Hair loss can be caused by Lupus itself or by the medicines that we take. My hair had thinned out because of the disease but I am also seeing more hair loss since I began taking MTX (which is odd because I am on a very low dose). For me I think it is the combination of high dose steroids and the MTX. My daughter commented the other day about how I had so few eye lashed anymore.

The good news is that this is a good time to have to deal with this. Wigs, hair pieces and weaves are in style now so no one would think anything of you going from thin hair to big, poofy voluptuous hair! So go experiment and have fun~

Jaime Bea
11-22-2011, 10:47 AM
I recently had a bald spot larger than a silver dollar on the back of my head. I will post pics one of these days on my profile. I keep Rogain in business! lol I have started loosing patches of my eye brows and listen I'm not trying to look like Vanilla Ice! So, I have become quite the master of illusion lately. I am actually looking for a cute hair style that will cover my unwanted spots yet, make my hair full. Any ideas???????

11-22-2011, 11:36 PM
i take a lot of meds for different reasons so i have noticed hair loss but i thought it was because of the meds i take. im thinking of shaving it all off. im having a hard time doing that. i hear that some people with lupus have to undergo chemo if that happens i'll just have to shave it off i can't bare to look at it come out as gobs of hair into my comb. i wear fake pony tails too and slick my hair back. people thhink its my real hair. i just got diagnosed with lupus so its too soon to tell if my hair is falling out because of the lupus. i'll let you know when i find out.