Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group loss of hair...anyone else?

Hey folks. Lately I have read a couple of posts where someone mentions losing their hair as a symptom of AS. I have been loosing my hair also, and I am not even on any meds?! [well to clarify that I am on steroid and dilating drops for my eyes and a new med I started this month for PBC] I think I have been loosing my hair now for at least 6 months. Not in patches or anything, but hair is usually all over my shirt, my dresser, and my brush is full of hair all the time. I think I can notice less thickness in my pony tail but that may be paranoia

Anyone else experiencing hair loss? with meds or without?

I am also HLB27+ and have iritis, haven't been diagnosed with AS but with the pre-AS [can't remember what it is called], have had Xray confirmation of arthritis in my shoulder, and have PBC {an auto-immune liver disease}, back, etc. Xrays and an MRI both done in 2006 did not show AS degeneration. I am NSD since Sept 2006. That should do it for info.

I am interested in what others are experiencing re similar symptoms, hair loss in particular right now.

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 3, my babies!

Hi Rita,
I used to have long (really long) hair, and I feared that I was losing my hair, due to AS or???. When I took a shower it was everywhere, and I had to clean out my brush every 2 weeks. I even had hair wrapped around the roller-brush thing on the bottom of the vacuum cleaner too. So I chopped it off one day, and I noticed that the problem was gone. Lately I'm thinking about growing it all back again... but this time it won't be as long. I used to like the long hair, because it used to help my neck out and keep it warm. Maybe for some of us AS'ers, hair starts coming out easier after a certain length, or maybe certain meds it will make it come out easier. It's only a thought though, because I haven't heard much about anyone else losing their hair yet.

Hopes this helps,
Take care,
James.

The only time I remember having excessive hairloss was after having babies and when I was taking large amounts of Vitamin A.

Sherri

Hi Rita

I am in the same boat with you.

I have been losing my hair and I am not on medication either. Hairdresser has been noticing areas of hair a lot thiner. I use to have long thick hair. I got tired of it falling out in chunks. Now it's not as noticeable. Just lots of short hair in tub, or drain.

I am HLAB27+, and have elevated liver enzymes.

Had x-rays done today. Technician, said pelvic bone tilted in, and beginnings of signs of AS. Until Rheumy gets back to me, I am, I guess pre-AS as well. Rheumy didn't not say that I didn't have AS. He needs to see sufficient signs of AS. Even then he said he would not rule it out.

Third time labeled with Fibro, I guess I better start accepting it.

I still believe I have AS. I hurt like AS. AS diet does help, when your able to follow it.

Hugs
Gerri

Hi Rita,

I seem to notice more hair loss when I am having to take high doses of steroids, alot comes out when I comb or take a shower...have never had a bald patch but my hair got fairly thin for awhile.

Now that I take steroids and I am hot all the time and I need less hair it is thicker than anything now..lol

Not sure what is going on,

Lisa

Hmmm.. yea I have little hair loss, I will be sure to ask rheumy at my next appt.. everytime I comb through my hair after washing, I get a big chunk on it! but at least it's more managable, though LOL ..

I lost about half my hair over the past few months - but it was due to the mass amounts of prednisone I was taking. Makes my hair super brittle and breaks off at the roots, so I had to cut all my long hair off. As long as I keep it long enough to put in a ponytail, it doesn't look so bad. Hope it'll grow back after I find a med that works and I can get off the steroids!

My grandmother had and my sister has troubles with their thyroids (hypothyroidism), although no AS. One prominent, yet undesirable feature of hypothyroidism is thinning and loss of hair. I'm not versed to the effect of steroids on thyroid function, but I can't imagine it is positive. Talking to your rheumy about having your thyroid checked might be beneficial.

Methotrexate made about half of my hair fall out over less than 6 months . . . and James? Cleaning out your hairbrush every 2 weeks is NOT very often! Men . . . *sigh*

While I was on the MTX, I had to clean my brush twice every day, and had to use a lint-roller on my clothes every time I brushed my hair because so much hair fell out and stuck to me. I still have issues with scalp showing through when I put my hair up, and I have this weird little "fringe" of post-MTX hair that's about 3 inches long now, it looks funny when I put my long hair up and my short hair stays down lol. (but my boyfriend's going bald, too, so he can't complain about my looks!)

One thing that helped me is Folic Acid . . . the doc gave me a scrip for it (1mg/day) when he put me on MTX and prednisone, and I noticed that when I stopped taking it, the hair loss accelerated quite a bit. Have you tried taking a prenatal vitamin? Those have Folic Acid in them, and my GP put me on them when she heard I was on methotrexate. Also, you might try eating a lot of Jello and/or taking Cod Liver Oil or some other Omega-3, they're supposed to be good for hair and nails.

Best of luck . . . it seems so DISGUSTINGLY unfair that this disease not only takes our health, but our LOOKS too . . . losing hair, gaining weight, growing sideburns and a pumpkin-face on Prednisone, swapping in contacts for glasses with Iritis, wearing "un-sexy" shoes . . . so hard for us women to deal with!

*hugs*

-Bridget

I haven't noticed any hair loss in fact quite the opposite...my doctors put me on a vitamin regimen 2x a day and it makes my hair grow like crazy and my nails...I have to get my hair cut every 4 weeks or I will look like its 1969 again.....not that it was a bad thing.