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Ulcerative Colitis
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Posted 3/27/2008 7:12 AM (GMT 0)
Ok...So are any of guys taking ONLY 5-ASA drugs and still losing hair? Keep in mind, I'm not including pred or steroids or anything like that. Cause I am healthy,taking low doses of Colazal (4 total a day) and haven't taken steriods in 2 years. I am losing a TON of hair. Other 5-ASA drugs are doing the same thing no matter what i try. Anyone taking something that doesn't cause hair loss?
Posted 3/27/2008 7:18 AM (GMT 0)
Hi....how much hair daily are you losing? or has that part stopped?
Do you notice any "babies" coming up?


I've taken 5ASA meds for over 19 years..oral and rectal..no hairloss thankfully, but I've never been on pred.

Are you male or female?

how old are you?

Does baldness run in your family on your mom's side?

q
Posted 3/27/2008 12:08 PM (GMT 0)
Are you on any supplements at the moment? If not, you might want to look into Biotin. Biotin is great for regenerating hair growth. However, if you are having massive hair loss for no particular reason, you should see your doc because that is not normal. What is your diet like?
Posted 3/27/2008 12:37 PM (GMT 0)
I am only taking 4 Colazal(generic) and have no hair loss. Before colazal, I was only taking Asacol 12/day for 7yrs, and had no hair loss either.
Posted 3/27/2008 1:43 PM (GMT 0)
Unfortunately, hair loss is a possible side effect of all 5-ASA's. Most people don't get it, but it's quite a problem for a few. I'd agree that trying the biotin couldn't hurt and might help. Enlist the aid of a good stylist to maximize your thinning hair.

Unfortunately, pretty much all the drugs we use - Imuran, 6MP, Methotrexate, even Remicade show hair loss as a possible side effect. I don't know if a different drug would stop the hair loss or not, but the 5-ASA's have the fewest serious side effects of any of these drugs. Sorry I can't give you a better outlook.
Posted 3/27/2008 2:31 PM (GMT 0)
Last fall, I had to increase my azulfadine dose from maintenance to therapeutic - basically doubling it. The past few months the hair's been falling out like crazy. I don't remember having this problem when I was on a therapeutic dose before - so it's evidently somewhat unpredictable. I'm glad I'm going back to the maintenance dose. Also glad my hair is thick enough I can lose alot and it not be too obvious.
Posted 3/28/2008 4:27 AM (GMT 0)
It's just weird..I have had absolutely no flare ups whatsoever since I was diagnosed. No other side effects other than hair loss. I take multi-vitamins,fish oil, I eat healthy,get plenty of protein in my diet. I workout 5 times a week. I am in excellent physical condition. I am not undergoing any major stress.I've been taking biotin(5000mcg) for the past 2 months an haven't really noticed any difference. There is NO ONE bald in my family or extended family! Even relatives 2 or 3 times my age still have a full head of hair! This is driving me insane! I am only 22 years old! I told my Dr. about this. It seems like he doesn't care! It's like ''go bald or die'' Honestly..losing hair can be pretty traumatic at this age....My hair looks super healthy. It is super thick,soft,and curly. It's like I'm losing it for no apparent reason. Who would I see for this kinda thing considering my dr. isn't helping me out?
Posted 3/28/2008 4:29 AM (GMT 0)
Quincy, I am losing prolly over 50 hairs a day just in the shower. There's just rediculous amounts that come out. But thanks guys for the replies!
Posted 3/28/2008 4:35 AM (GMT 0)
I think I've heard that people in general can lose up to 100 hairs a day, and that's not limited to people who have illnesses...but don't quote me on that number, it's just what I've heard.


:)
Posted 3/28/2008 7:32 AM (GMT 0)
pb4...you heard correctly.

WindsofCreation....am I missing something...you say your hair looks healthy and is super thick?

q
Posted 3/29/2008 5:05 AM (GMT 0)
Yes quincy! It's weird!!
Posted 3/29/2008 12:31 PM (GMT 0)
Winds, I say that if your hair is thick and you are losing hair but you are not getting bald patches, then you have nothing to worry about. I too have very thick hair and after I started on 6mp, I was losing it immensely too and started freaking out. But it slowed down and my hair never really went to being really thin. Just a bit more managable :) You should just keep an eye on it and like I said, if you aren't getting bald patches then it should be fine. Now if you start having bald patches - then you should go see the doc.
Posted 3/29/2008 9:06 PM (GMT 0)
Ya....I am starting to see bald patches on my temples. I told my doc that i am losing hair. He pretty much said that all 5-ASA drugs can cause hair loss and no matter what I take I can still lose hair on those drugs. That's rediculous. It's like a ''professional brush off'' so to speak. What do I do?
Posted 3/30/2008 12:29 AM (GMT 0)
WindsofCreation - That sounds exactly like me.  I also have tons of hair loss from lialda.  I also had it while on Asacol.  I am convinced it is from the 5-ASA meds and nothing else.  Like you I also have very thick curly hair, but bald patches on both temples.  Luckily I can hid it with surrouding hair, but if I pull my hair back its very noticeable (for the first time in my life I understand why bald men try the comb-over!).  I told my GI and he ordered a blood test for thyriod, but that didnt show anything wrong.  I guess I just have to live with it.  I do have a few very short baby hairs growing back in that area, but it is falling out faster than regrowing.  I find it everywhere - the shower, my clothes, my pillow, the floors.  I even burned out the motor of my vacuum cleaner recently because there was so much hair in it.  I have noticed though that the hair loss slowed a bit when i dropped from 4 lialda pills a day to 3. 
Posted 3/30/2008 12:33 AM (GMT 0)
I'm not aware of anything to prevent the hair loss. I suppose you could see a dermatologist, but suspect you'd just be told they can't do anything because it's a side effect of the drug. I know it sucks. We put up with so much, sometimes it's the cosmetic things that just put us over the edge. I'm really sorry.
Posted 3/30/2008 3:34 AM (GMT 0)
Ok thanks for the replies guys. It sucks...it's like the doctors you go to don't even care and you freak out and don't know what to do. Sore, thats crazy that you are in the same exact situation. What sucks though....we can ony hide the bald spots for so long. It looks like they are gonna get worse over time. darn 5-ASA's!
Posted 3/30/2008 1:03 PM (GMT 0)
I know, I imagine myself in 10 years looking like some of the those aging rock stars from the 80s hairbands with really long hair in the back and wearing a bandana or hat to cover all the baldness in front!

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