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severe hair loss from Lialda

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Ulcerative Colitis
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Posted 5/21/2008 6:49 PM (GMT 0)
I'm new at posting here but wanted to share my experience and ask for advice.

I started taking Lialda 8 months ago. It worked great as far as making me feel normal again....however I started losing my hair about 4 months ago. It was tolerable in the beginning but the more time that went by the more it started to show. Now I'd say I'm down 45% of hair gone from my head. It's awful....handfuls at a time fall out in the shower. So..... I freaked out and got in touch with my GI. She said stop taking it immediately and that's where I am at the moment. I haven't taken anything in week. Thought I could handle it but I WAS WRONG. I feel horrible. Back to having a major flare.....and very depressed. I suggested taking Sulfasalazine (Azulfidine), after researching it's pros and cons. Hopefully the hair loss will stop!!

Has anyone suffered from hair loss due to UC meds??
What was your solution?
What are you taking now?
Any advice for getting my hair to grow back?
Also, what about headaches and nausea associated with Azulfidine??

Any help would be great.

~Brooke
Posted 5/21/2008 6:59 PM (GMT 0)
If you do try the sulfasalazine and you get headaches and nausea, I believe you can be desentisized.......You would have to start at a low dose and increase gradually. I've never experienced any problems from it. Hope it works for you if you try it. What did your GI say about you wanting to try the sulfasalazine? Have you tried any rectal meds? That can also help along with the sulfasalazine or whatever other med you may try.
Posted 5/21/2008 7:16 PM (GMT 0)
I think a lot of us have had hair loss. I first got it with Asacol and switched to Colazal and it stopped. Had it again with Azathioprine and I stopped taking it, mainly due to migraines. Might try Biotin 5000 mcg - I think that's what it is. It really turned things around for me and you can find it at most drug stores. Good luck - hair loss it no fun.

Posted 5/21/2008 8:41 PM (GMT 0)
I have it with Lialda too. My shower drain is constantly clogged up. I'm on a higher dose now, but it seems to have evened out. Thankfully I have mega-thick hair, so it doesn't really bother me except for the hassle of hair everywhere. My bathroom is all white tile and countertops and I'm constantly sweeping. I have also noticed that my hair is really really dry and frizzy though - i wonder if that's related?
Posted 5/22/2008 5:24 AM (GMT 0)
Ok....so does anyone know why 5ASA drugs cause hairloss specifically? I too am losing it, and have made numerous posts about it. Had it on asacol(only 4 a day) had it on lialda(only 2 a day) and now with colazal(4 a day) It's like my GI doesn't even care. It's rediclous. Any options?
Posted 5/22/2008 6:12 AM (GMT 0)
A lot of medications can cause hair loss. Unfortunately that included pretty much everything that's used to treat UC. You could request to go on Sulfasalazine and see if it's better for you, but it may have its own side effects.

Your GI probably isn't responding too much to this complaint because the only thing he or she could do to stop the hair loss is to stop the medicaton, and then you might flare again. You always have the option to do that if it's important enough to you.
Posted 5/24/2009 9:20 PM (GMT 0)
I was put on Asacol many years ago after havng a major flare up, a few months later I was losing my hair in droves!!  It does stop but its so frustrating.  I was than put on Colozal because the Asacol stopped working.  I was great for almost 5 years and than had another flare in December and the prednisone didn't help at all, they put me on Lialda and it still didn't help then I went on Remicade and it was a God sent.. After the 1st infusion I felt like a new person.  My GI kept me on the Lialda and all of a sudden like last time my hair started falling out!!!  I have been taken off the Lialda because of the hair loss and it has started to slow down.  There is hope and your hair will stop falling out you unfortunatley if you stay on the meds you just have to wait it out.  PS Your hair will grow back, so thats another plus sometimes even thicker than before.

.

Kelly

Left sided UC Diagnosed 7 years ago

Remicade therapy

Posted 5/25/2009 1:12 AM (GMT 0)
I had been losing hair for months but the loss evened out. I was on Asacol. I also had the texture of my hair change and it absolutely will not hold a curl, even with "hurricane proof" hair spray :)

My doc and I think the hair loss was more due to either my birth control pills (I am dealing with perimenopause too - at age 37 no less!) or the iron and Vitamin D deficiency than the Asacol ... of course, I am now on Lialda. I hope I don't start losing hair again!
Posted 5/25/2009 1:58 AM (GMT 0)
I lose a lot my hair with colazal and i take a small little pill called Biotin and I have seen a good difference. i still have hair lose but it is WAY less
Posted 8/11/2009 1:15 AM (GMT 0)
I actually started taking this as prescribed a few months ago and out comes the hair. It sucks. I have long hair and play the drums and man is does it suck. I used to take 9 Asacol a day and I now remember why I had stopped taking it!!!! Gawd, I have noticed it so much and it is driving me insane. My doctor does not seem to be too concerned as he is simply trying to keep me out the darn hospital again! confused
Posted 8/11/2009 1:32 PM (GMT 0)
I had hair loss with Lialda too. I'm still taking it, but half the dose I was when my hair was coming out.

I have baby fine/thin hair but a lot of it. It sucks though because if I lose any of it, it just gets realllllllllly thin.

It's gotten a lot better with my smaller dose of Lialda though. Thankfully.
Posted 8/11/2009 4:07 PM (GMT 0)
My hairloss has stopped. I am not sure why I am not losing hair anymore, I take the same dose.
Posted 8/11/2009 8:04 PM (GMT 0)
I am starting to think my hair loss was from nutritional deficiencies ... I have been on iron and vitamin D for months now and had blood retested. I am back within normal levels (no more anemia!) and have noticed those thinning scalp areas are filling in quite nicely ... all this while still taking Lialda ... only thing different is the addition of probiotics and fiber supplements recently ...
Posted 9/28/2009 5:14 PM (GMT 0)
I am so relieved to read others having the same issue of hair loss with Lialda.  I was diagnosed with UC @ 15 months ago and have been on Lialda that long.  I have handfuls (it's actually kinda gross!) of hair come out every day and after thinking back on it - it probably started a few months after I started the Lialda.  I am only 43 and thought it was genetic baldness and have been devastated at the loss of hair on the top of my head.  I went off the Lialda about 10 days ago and I would say my hair loss has decreased by more than 60%!  The doctor told me it wasn't a "listed" side effect but anything could be.  Unfortunately, on the flip side, my UC is starting to flare up.  I'm going to try Canasa and hope that keeps it under control.  I actually even think I have a bit of "peach fuzz" growing back! 

Posted 7/8/2010 11:52 PM (GMT 0)
I have been on lialda now for about 2 months and feel better but I am loosing sooooo much hair! I wish I knew what to do!
Posted 7/29/2010 4:19 AM (GMT 0)
the dermatologist suggested rogaine (men's version, for both males and females)...said it can help with the hair loss...I showed her a photo of what I lose in one shower...impressive...sad. I didn't buy the rogaine yet because it's tolerable for me so far, but you could try it.
Posted 7/29/2010 1:32 PM (GMT 0)
I'm experiencing hair loss too, but from remicade not lialda. I started infusions in April/10, and my fine hair is going rapidly. It's frizzy too and dry. I'm seeing my GP and doing some blood test. From what I'm reading here, it sounds like a side effect, and vit/mineral deficiency. I will not stop remicade. My flare up put me in the hopsital for 2 weeks. I'd rather have little/no hair. I'll see what I can do with vitamins and a balanced diet.
Posted 7/29/2010 3:12 PM (GMT 0)
I just started the Lialda in June. I haven't noticed hair loss but I have had daily headaches, joint aches especially knee pain, and an itchy rash. I also have had sudden onset of weight gain. I just stopped it yesterday and went back to m Asacol. I think the Lialda was making me feel better but the side effects were just too much.
Posted 9/30/2010 5:31 AM (GMT 0)
Yeah I had a substancial amount of hair loss during my time on Lialda :(
Posted 10/15/2013 9:09 PM (GMT 0)
I also am having hair loss from Lialda and I just got diagnosed in July so this is all very new to me and ya, I'm freaking out also. Does anyone know what can be done to combat this hair loss.
Posted 1/1/2014 2:49 PM (GMT 0)
Ive been on lialda for less than a month and im losing a lot of hair. Its scary but hopefully the suggestions on here will help.
Posted 1/1/2014 2:58 PM (GMT 0)
I have been on Lialda for over 2 years and have not experienced hair loss. It's freaking me out a little bit, now knowing it's haunting over me. But I'm gonna rock long hair till I lose it (if I do at all). I haven't any side effects from Lialda. Maybe itchiness, if that counts.
Posted 1/1/2014 3:59 PM (GMT 0)
Hair loss from the 5ASA's can be a side effect but it effects very few in this way. Prednisone seems to cause it more. Maybe sometimes the 5ASA's get blamed for something that the prednisone is actually doing. If you have taken Lialda for two years with no problems I don't think I would worry at all about this possible side effect.
Posted 1/1/2014 4:07 PM (GMT 0)
Good point. It probably would've showed up by now. . .
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