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Just reached my breaking point....

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Ulcerative Colitis
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Posted 10/6/2009 4:10 PM (GMT 0)
Even though Asacol is keeping in remission...I can't live with the hair loss.  It may sound stupid...but I have reached my breaking point...Between the pred and the current meds making me gain all the weight I worked hard to loose before I was diagnosed...all I had left was my hair...

I am not sure if I should just quit or ask for a non 5asa med...

Please don't take this as a suicide threat, but I feel like I really don't care if I die...I am so overwhelmed right now..

Posted 10/6/2009 4:15 PM (GMT 0)
Hey FairyGen -- I totally understand where you are at right now. I too gained all my back that I lost on WWatchers, lost all my hair, and felt just plain lousy. Go in and talk with your doc about options -- there are so many meds out there that maybe there is another that won't wreak such havoc on your body. Take care, and do something nice for yourself. Can you go for a leisurely walk? Sometimes the exercise helps, and it's nice to look at the scenery while you walk. Sounds silly, but it used to do me a world of good....actually still does!

Posted 10/6/2009 4:17 PM (GMT 0)
What all have you tried using to curb the hair loss?

DO NOT QUIT the Asacol!!! I mean, I'd much rather be bald (with or without a wig) than to feel as horrible as I did when I was flaring. And I just know that I would if I didn't take the mainetnance meds. You could maybe switch to Lialda or Apriso, just in case it's an inactive ingredient in the Asacol and not the mesalamine that's causing the hair loss. Or maybe you could try sulfasalazine. I'd be heistant to switch to imuran or 6mp, as their long-term side effects are a bit more worrisome than the long term side effects from mesalamine drugs.

However, maybe give it a *bit* longer. How sick were you when you were flaring and how long have you been on Asacol? A few weeks after I started Asacol, I lost a whole, whole, whole lot of hair and it continued for a couple of months. I'm not sure if it was just my pregnancy hair coming out or I was loosing hair because of being sick or because of the Asacol, but it eventually stopped.

Maybe you could get some counseling. I had problems with post partum anxiety/depression, and just talking to a therapist a couple of times helped tremendously.
Posted 10/6/2009 5:11 PM (GMT 0)
How long have you been on Asacol?

I had really bad hairlosss for a while but it stopped one day and I haven't had any issues since. I take a higher dose and 1000mg suppositories too. You should stick with it, the hairloss will probably let up. Do you take biotin? I have heard it can help.

It's too bad we don't lose hair from our bikini line or legs... 

Posted 10/6/2009 5:21 PM (GMT 0)
I was on lialda for 2 months but the side effects were worse and included hair loss, I have been on asacol for about a month now. I am on welbutrin too but I have never had hairloss before...

I have only had about 15 days of really bad flair with ten years of problems I didn't know was UC.

I will get to the biotin soon..It's just hard because things are getting expensive and I just don't have the money to buy all the supplements or good healthy food.

I know I am not as bad off as many people (probably most) but no one else can even begin to understand how I feel, plus I was pretty good at hiding how sick I was so they don't even understand it from that point of view..
Posted 10/6/2009 5:40 PM (GMT 0)
I wonder if it really is the Asacol making you lsoe your hair- I've been on that drug since diagnosis (aside from a short, stupid, 3 month break), & had never lost much hair at all. I did lose a lot of hair after being on & off pred 3-4 times, & after becoming very ill with flares- I mean SICK sick, you know, can't get out of bed sick. So it could just be your body dealing with it's issues right now- I lost some hair initially on Imuran too, but that seemed to stop. What about a wig? I know it sounds crazy, but you can get really nice ones. And it's a one-time expense, as opposed to a supplement that may or may not help. Or cut your hair super short & go with it! It'll grow back, & likely be better than before. This too shall pass...

Posted 10/6/2009 5:41 PM (GMT 0)
I had major hair loss with Asacol and switched to Colazal and it stopped almost immediately. I would second the Biotin - be sure you get the 5000 mcg, not 1000 mcg. It's like $5 and you can buy it at most drugstores. Hang in there. This too shall pass.
Posted 10/6/2009 6:08 PM (GMT 0)
If it's not Asacol, what would be causing the hairloss? My hairloss started when I started Asacol and lasted for about 3 months. The only other thing I was suffering from at the time was iron deficiency. Could that have been the source of my hairloss?

I just looked it up and low iron can cause hairloss.

Maybe my hairloss was due to anemia not 5ASA.

Do you have low iron?

My hairloss did improve and so did my iron. Maybe it is linked. The only thing that doesn't make sense is that I didn't have the hairloss before I took Asacol and I would imagine my iron was extremely low long before I took Asacol.

https://www.healingwell.com/community/default.aspx?f=38&m=1131847

Posted 10/6/2009 6:12 PM (GMT 0)
I am so sorry you are feeling down....I too am at my breaking point. Lets hang in there together. Things could be worse. I am sending you a big hug. Maybe you could switch to colazal. That is what I am taking and I haven't lost hair.
Posted 10/6/2009 6:16 PM (GMT 0)
good point, notsosicklygirl- I used to be super anemic also, maybe that contributed to my hair loss. Because I had been on Asacol for like 3 years before I started to lose hair! I think it probably takes a while to become anemic if you're losing blood from rectal/intestinal bleeding- because you really don't lose much blood at any given time, it's just a slow, continuous blood loss. Bottom line is, once my health slowly started to improve, my flares lessened, iron levels went up, my hair loss slowly decreased. I think this would be true for most people- apparently hair loss is a pretty uncommon side effect from Asacol. 'Course you could just be that lucky one! haha.... kidding!

Posted 10/6/2009 6:27 PM (GMT 0)
I agree...you have to look at the whole picture and why hairloss happens, how long it takes for it to be dormant, fall out, start back to grow and for you to see results.

So, please don't go off the Asacol.

You were also on pred...that will cause the whole process to go in high gear as well.

Get your bloodwork done, know it takes at least 3 months for the hair to even reach the scalp and another month or so for you to see the little "babies" coming up.

This has been happening before you were on Asacol....

Reconsider.

Do start B vitamins with extra biotin.

Do make sure you're taking Vitamin D, Calcium, Magnesium..etc.

Hang tough....oh....start wearing your hair a bit differently...maybe that will help with the visual aspects of your hairloss.

quincy
Posted 10/6/2009 8:04 PM (GMT 0)
Thank you for all your support....I originally thought maybe the pred...but I wasn't on it that long..2 weeks with no taper 40 mg...

I guess maybe thinking about it...deep down I just feel I have lost control of everything...My hair was the last thing I had...

My iron is not low but my B12 is....
Posted 10/6/2009 9:04 PM (GMT 0)
I think one of the side effects from Asacol is temporary hair loss (as with most IBD meds) and of course if varies from person to person as well, some may not have any hair loss from their meds at all and some have extream hair loss...other things that can contribute to poor hair and nail health is absorption issues and when you have an IBD it's pretty common to have issues with absorbing all the nutrients for good health via food, plus if you're not eating healthy enough to begin with then that makes it even worse.

:)
Posted 10/6/2009 9:15 PM (GMT 0)
I had pretty bad hairloss too initially when starting on asacol. For about a year I had 2 bald patches on either side of my temple. It was pretty depressing. After about that first year it slowly improved and now I dont think you can see at all where those bald patches were.
Posted 10/6/2009 9:31 PM (GMT 0)
(((Gen)))

I hear you about the lack of control... and really, how unfair is it that one illness can take so much from you?

:-(
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