HealingWell
Search Close Search
☰

New UC victim ~ any words of advice for hair loss?

Support Forums
>
Ulcerative Colitis
Have you experienced any hair loss since your diagnosis with Ulcerative Colitis?
None (outside the normal range...) - 40.0% - 8 votes
More than usual - 15.0% - 3 votes
Significantly more than the normal amount - 45.0% - 9 votes
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/17/2010 9:58 PM (GMT 0)
I was diagnosed with UC on July 19, 2010, but was suffering from it since March 2010 (just didn't know what it was until July...).

I have noticed that I have been losing a lot of hair since late August. My hair is typically beautiful and full, but now it looks like anorexic hair!

My GI told me that he does not think the hair loss is related to the Asacol or my UC in general, because this side effect rarely occurs in patients without any other side effects.

Does anyone have any thoughts or advice on this? I have been taking "hair supplements" and pregnatal vitamins for two months and have not noticed any difference at all. I have gained back almost all the weight I lost during my *horrific* flair (I am 5'6 and usually weigh around 123lbs, but I went down to 110lbs ~ I looked terrible!). I know I was starved of vital nutrients for an extended period of time, but could that still have an effect on my health today?

Also, I am pretty sure I am not having a flair any more because I only go 1 time a day (occasionally 2...) and it is pretty formed, but the BMs do not look they did before I was sick. Does this mean I am still having a flair ~ maybe just a mild one? I mean, don't get me wrong - it is NO WHERE close to how bad I was a few months back (going watery, bloody diarrhea up to 20+ times a day...), but I just am curious if I am "out of the woods" yet.

Does anybody have any special remedies that work for you in general? Or even for hair loss?

Thanks in advance for your thoughts and opinions!!! wink
Posted 10/17/2010 10:07 PM (GMT 0)
I am one who lost hair taking Asacol. What is weird is when I switched to Lialda (basically the same drug as Asacol) my hair started growing back! Of course, the supplements I took could have done something too. I think it is too much of a coincidence that many other people with UC and taking the same drugs also have lost hair.

Have you taken any blood tests to check your iron levels? What about vitamin D and other nutrients? I took a combination of slow release iron and vitamin D-3 along with calcium citrate, fish pills and probiotics and my hair started growing back. You may just need to add nutrients back into your body ...

You might want to consider taking fiber supplements to bulk things back up too ...
Posted 10/17/2010 10:13 PM (GMT 0)
Welcome to the forum!
I have lost hair up to a few months following a bad flare - or a few years ago, I lost a lot of hair a few months after a horrible bout of a weird virus.
I've taken Asacol for about 17 years and haven't have noticeable hairloss with it.

So, one thing - we're all different, so.... could be the Asacol or the UC in general.

My favorite supplements is to take probiotics (the good bacteria). They help my gut a lot. My son gets benefit from Align, and I've taken Ultimate Flora and Primadophilus as well as VSL.
And I'm always putting in my 2 cents for Metamucil, which for me makes my stools clump together and easier to pass.

Again, welcome!
Posted 10/17/2010 11:40 PM (GMT 0)
When mine started falling out a few months after my flair started I was told that when we are very ill our bodies tell the hairs it's time to cycle out. This can take a few months to kick in. I had all the tests including my thyroid and was told it will stop falling out when it's done and that's that. It does stop eventually. Still sucks when it's happening though! I know you feel like what's next! One thing I've been learning from this site is you're not alone. Every symptom I've had I've found someone else has had it too. It does strangely make you feel better.
I haven't had full remission yet so I can't comment on the latter questions.
Posted 10/17/2010 11:54 PM (GMT 0)
Thank you everyone for your quick replies!

I guess my next main question will remain around what truly constitutes going into "full remission"? I do not know if how I am right now would be considered as full remission or not...
Posted 10/18/2010 12:04 AM (GMT 0)
I'm still trying to figure out the remission question myself..but blood is back so I now know that I'm in the no category..I will say, vitamin D3 DOES help hair growth tremendously, so much that I could have my hair but every two weeks it grows so fast, I take 5,000 IUs a day + magnesium. My nails grow like crazy too.
Posted 10/18/2010 2:14 AM (GMT 0)
Welcome to the forum! I agree that hair loss is reason to freak out over UC, not that the colon malfunction itself isn't enough to drive one crazy. My hair fell out by the ton a couple months after I had to go on hydrocortisone retention enemas to combat a severe left-sided flare. Things improved when my overall health did, and taking a reliable multivitamin daily kept my hair (& nails) growing back. Some members have posted in the past that Nioxin shampoo seemed to help them recover from excessive hair loss. I wasn't too surprised to experience fallout from UC meds because I had also noticed hair loss in the past while taking Rx antibiotics, especially Tetracycline (grrrrrr!). As to how one gauges real remission, when you get back to one bm daily that's pretty solid w/o passing any mucus or bloody gook or feeling urgency, you'll be there. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/18/2010 5:44 AM (GMT 0)
My hair started falling out excessively about a month after I weaned off prednisone. I was on pred for about 4 months after being diagnosed in early April of this year. And I agree, it is a stressful thing when you pull out big clumps in the shower. I dreaded washing my hair and brushing it out because the amount of hair that fell out scared me. I already had baby fine, thin hair to begin with. I saw my gp about it and she said that it's because my body went thru a lot of stress for quite some time. She recommended rogaine which I started almost immediately. about 1 1/2 months later, I noticed my hair is not shedding as much. I still see a lot of hair falling out but much less than before. I don't know if the rogaine is helping or if my body is adjusting better to the asacol or if I'm less stressed. I am still doing the rogaine just in case. I ended up cutting my hair too and I miss my long hair so much. Sometimes I psych myself out to think it's just hair so I don't add to my frustrations with this disease. This disease is also still new to me and I am hopeful that I can still be normal and feel as good as I did before I had my first flare. To answer your other question, it sounds like you are in remission. I thought I was in remission and I was going up to 3x a day (no blood). But since yesterday I think I might be experiencing a set back. I hope it's just a minor bleep.
Posted 10/18/2010 3:03 PM (GMT 0)
I've been in remission since January 2009 and have been losing hair since fall 2008. None of my doctors think it's a big issue because it still looks like I have a lot of hair (I was lucky to start out with very thick hair, but I've still lost half of it). Some people have reported hair loss with taking Asacol, but I was losing hair even before I switched to Asacol. I finally gave in and am trying the Nioxin shampoo.
Posted 10/18/2010 3:23 PM (GMT 0)
I had major hair loss with Asacol. Switched to Colazal and it stopped. Try Biotin 5000mg, you can get it at CVS for like $5.

Posted 10/30/2010 3:28 PM (GMT 0)
Hi just wanted to post my experience. I was on canasa 1000mg (mesalamine- same drug as asacol) for about 4 months, three months after I started the hair loss started. I was so scared I have thin hair already and I felt like it was coming out by the handfuls after I would shower. Thr good news is that it only lasted about 3 1/2 months and oddly, my hair doesn't look noticably thinner. I don't know how that's possible. I also started using nioxin follicle booster and nioxin shampoo/conditioner in the last month, and will continue to take biotin for a long time so it grows back thicker. It falls out a bit more for 2-3 weeks when you start nioxin but then it totally stopped falling out. But hang in there! No bald spots just general shedding. It will pass! I should also mention that i stopped the meds the same month my hair started falling out. I had already bern tapering off my meds and had started the scd diet. I've been med free since with scd.

Post Edited (KatieinBrooklyn) : 10/30/2010 10:22:30 AM (GMT-6)

Posted 10/31/2010 5:28 PM (GMT 0)
A lot of my hair fell out when I tapered off pred. It stopped falling out a few weeks after I stopped it completely. I asked my doctor about it and he said he sees it a lot with Asacol and he sees it when patients flare, just because their health isn't great.
Posted 10/31/2010 7:01 PM (GMT 0)
After being diagnosed with UC in July 2007 I started Asacol...my long THICK hair started coming out as well...I literally lost half my hair, luckily I did have really thick hair.  Yes, I was very sick, Yes, I was on Asacol, and Yes, I was on Pred...all I know is my Gastro switched me to Colazol at that time and my hair started to not fall out as much.  In this I say, Yes, he switched meds, yes, I was on my way to getting better, and yes, I started tapering off pred.  Can I say exactly what it was, No, but I do think, as many others have said...your body is just sick and some deal with sickness differently.  Unfortunately, your hair, which is so vital to a lot of us women, started falling out.  I hope you are able to find your happy place.  I have gained an abundant amount of knowledge belonging to this site.  I come and go...there are months that go by when I don't visit.  I have adjusted to UC...in remission most all the time now...suffering from all sorts of other ailments now!  Welcome!!!
✚ New Topic ✚ Reply