Hair loss. Ladies with UC, I need advice!

Howdy, folks :) Lurker creeping out of the shadows for some advice.

I'm a 24 year old woman with UC. So far I've been really lucky -- I've been taking mesalamine pills for the last few months and they've kept me mostly in remission, comfortable, and able to live my life and stay in university. There are almost no side effects, except for one little thing... I'm losing a lot of hair.

My hairdresser was the first one who noticed. I was getting a trim about six weeks ago when she pushed my hair back from my forehead and asked, "Are you pregnant?"

We're buddies, so she's allowed to ask me random questions like that, but I'm lucky I wasn't drinking anything or it would have come out of my nose at that moment. I told her no, I was definitely not pregnant.

"Weeeird," she said slowly. "Um, don't freak out, but... you're losing a bit of hair."

Wait, what?!

She'd experienced hair loss during pregnancy, the kind where it recedes up into your temples, and noticed the same thing developing on me -- hence the horrifyingly awkward question.

I knew that hair loss was a potential side effect of mesalamine, but it never clicked that IT MIGHT ACTUALLY HAPPEN TO ME. And honestly, even if I lost my whole head of hair, it would be worth being in remission from UC. But... it still kind of hurts.

Since that day with my hairdresser only six weeks ago, it's gotten much worse. I've always had thin, fine hair, so it's becoming really noticeable. It comes out in handfuls in the shower. Some of my friends have begun to comment on it. In desperation, I've chopped my waist-length hair up to my shoulders in the hopes of giving it a bit more oomph, but... nope. The top and front are, frankly, balding, while the sides and back are still thick, just like male pattern hair loss. (Except I'm a woman. And 24. FML.)

I've changed my shampoo to a sulfate-free one and have begun taking a special multivitamin for hair growth, but so far it doesn't seem to be working. I've spoken with my doctor and she's confirmed that the hair loss is a side effect of the mesalamine. She's offered to change my medication, but has warned me that other brands will likely do the same thing.

So it looks like this is something I just have to deal with indefinitely. My question is this -- has anyone else experienced such severe hair loss because of UC medication? Ladies, how do you deal with it gracefully? Are there any quick fixes -- hairstyles that worked for you, or pills you took to make it grow, or anything else you can suggest?

I don't want to be a drama queen and start wearing chemo hats, Alice bands and headscarves, which will just draw attention to the fact that I have a problem -- but it's getting to the point where I don't know what else to do. A simple side-part or comb-over won't cover it up anymore. I'm wearing a toque every day when I go out just to hide the fact that you can see most of my scalp through my hair now. Thank god it's winter!

Tomorrow I have to go schmooze with the in-laws for Christmas dinner. They're wonderful people, but they haven't seen me in a while, and my partner's whole extended family is going to be there, and... I'm just feeling a bit self-conscious about my hair. A bit. *flails in panic*

Sorry if I sound like a drama queen. I'm still pretty new to UC, so all of this is a bit overwhelming. I should really just be grateful for my health and leave it at that, but I'd really like to know if anyone else has dealt with this!

Thanks for any advice you can offer, and have a wonderful holiday!

I've lost 3/4 of my hair from surgical stress (five surgeries this summer). It seemed to just come out during a period of 1.5 weeks. Before that, I was loosing more than normal from UC and meds, but it was definitely manageable.

I went to my primary and he ran a "hair loss panel" of blood work. Basically it checks your thyroid function, anemia, and other vitamin levels. We were pretty sure it was surgical stress but wanted to make sure.

My doctor advised monoxidil (over the counter) to help hair growth. I've also cut my hair quite a bit and I'm waiting to get in to my hair person. She's awesome and therefore always booked up. I'm guessing it will get cut into a bob. I also have very fine hair. My hair looks like "feathers" right now according to my mom. It's broken off and lost hair in the layers so each strand kind of hangs out by itself in way, making it flyaway and frizzy.

I've also been advised to use a scalp stimulator. It's a spray that "invigorates" and supposedly encourages additional blood flow. Not sure if that works.

I think the best bet is a wide hairband. Don't add extensions or fake hair that clips in...you'll just loose more hair. I also try not to style it and not to wash it too often, although it oils up more now that there's not as much there :(.

Like AUC I lost a lot of hair from surgeries. Luckily I had so much to begin with that it isn't really noticeable to anyone but me and my hairdresser (I started going to her after my surgeries and she was sure I was a cancer patient). In any case, hair loss can be caused by any of three deficiencies that are extremely common amongst UCers: vitamin D, iron, and folate. They're all also pretty easily supplemented. So I would get those levels checked and then regroup accordingly.

In the meantime, be gentle with your hair, no brushing, rubbing with a towel, heat styling, try to shampoo less often, etc.

I only had hair loss when I was on pred. However, if the Lialda I take gave me that side effect I think I would still stay on it as it has me in remission. I would probably cut it short and get a good wig. LOL

While I haven't looked muc into this, I just happened to be reading this as I came across your post. Im all about going the natural route as much as I can, and I just started the mesalimine tablets today. Ive been on the suppository for a few months but recently discovered that I have mild UC a little bit higher up than what the suppository can reach. Hair loss has been a huge fear of mine, and it matt sound superficial to some; but being a young women, single, I'm also a hairdresser , my hair is my thing and I still like to take care of my appearance regardless of whether I have this ugly annoying disease or not… Below is the site, might be worth checking out!

http://www.stylecraze.com/articles/natural-hair-growth-treatments-that-actually-work/?ref=1

Hi there! Sorry that you are having this happen. I have had the same thing going on. I had a huge flare in March and was on pred until about mid-August. I take 4 Apriso each day and use a mesalamine enema every night. I have been in remission for about 3 months. I also take a multi vitamin, calcium w/ D, extra vitamin D, Potassium supplement every day. My hair started coming out after I started the enemas. I had been on mesalamine orally when I was first diagnosed and took it that way for a very, very long time with success for a long time. I then had to start using the suppository, which worked for a pretty long time. Anyway, all that said, hang in there. Take your vitamins every day and try to keep as healthy of a diet as you can. Most people could not tell that I was losing hair (I have always had about four times more hair that most people I know), but I could and my hair dresser could. It has finally started growing back in and I can tell a difference when I feel of it and wash it. Many have had a worse time of it, so please also listen to what they have to share. I've never been one to worry so much about things like that, but it's my hair and I didn't want to lose it. BUt no one does. Good luck with it and hopefully it will get better over the next few months.

I wouldn't go for a perm...you might end up doing more harm than good to your remaining strands.

My doctor was telling me what he was looking for when he was examining me. If a person had developed alopecia, then they hair would be coming out in sections/clumps and not spread out throughout the scalp.

Okay, I'll admit it. I'm a bit vain. When UC took 80 lbs, it was great to fit in a size 2, but the hair loss and sagging skin were so bad. The sagging skin could be his mostly with clothes, but the hair.. I barely brushed it because it fell out everytime I touched it and it was so thin on top. My self esteem was shot all to hell.

Since I started hitting the yeast and healing my leaky gut I can now absorb food and nutrients. I take b vitamins and biotin for methylation and yeast.. Plus I can eat so many more foods now. Anyway, my hair is finally coming back in. I have eyebrows now! And the hair on top has come back, it's only 3-5" long at this point so it looks kinda fuzzy.. But it's back.

I guess my point is that when you start healing more it will come back, this is but a season.. Keep rocking those toques.

I had quite a bit of hair loss after starting IMuran a couple years ago. Nioxcin helped a lot. If you are in the US, Ulta has specials on it occasionally to help w/ price.

skookum... glad the silly xmas hat was a hit ;)

Hope things start looking up for your head! Ive heard good things about Nioxcin.

Hopefully a varied diet and supplements will help :)

I had some hair loss for a while, and I chopped mine super short (like, pixie short). I also stopped blowdrying it when I could, stopped coloring it for a long time, used a really nutrient rich shampoo/conditioner, and only washed it about once every 3 days or so. It seems to have put a slow on the hair loss.