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Crohn's Disease
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Posted 8/17/2012 2:12 AM (GMT 0)
Hi everyone. I've been on Humira for over a year and I feel great. For the most part my Chron's symptoms are gone and I'm happy to say I'm in remission :). But about 2 months ago my hair starting falling out. My friends and family tried to convince me that is was due to the hot summer but I've experienced hot weather shedding in the past and it didn't compare to what I now loose. My scalp became inflamed with dermitis. That was challenging but I of course attributed the hair loss to that. I have the dermatitis under control but much to my dismay the hair loss is not getting better. I'm trying to not indulge in my vain sorrow but I am disturbed over my balding head. Has anyone else dealt with this? Should I start thinking about the Shane O'Connor look?

Salubrious 

Posted 8/18/2012 1:13 AM (GMT 0)
Hey there! I'm glad you're in remission! :)

I don't know if this helps.. But whilst I was on pentasa, I had terrible hair loss and I was fourteen at the time. My parents took me to the dermatologist and they said it was alopecia and prescribed some drops to put on my hair, which actually worked! That year, my GI told me to quit taking pentasa and I began my journey with Imuran. What have you decided? Did you visit a dermatologist? Or tell your GI about this?
Posted 8/18/2012 1:16 AM (GMT 0)
Oh yes, I forgot to ask, do you take folic acid? Perhaps that will help?
Posted 8/18/2012 4:06 AM (GMT 0)
Imuran, huh? How has that been working for you? How do you feel? I really appreciate the dermatologist advice. I haven't thought of that yet. I have contacted my GI doc this afternoon actually and he suggested contacting the Humira hotline. I haven't yet done so. And I just started taking folic acid and B-12.
Posted 8/18/2012 2:52 PM (GMT 0)
Imuran has been good to me so far..except for lowering my WBC count. Overall, I've been in remission with it for quite a long time now! Keep us updated about yourself! Tc
Posted 8/19/2012 2:09 PM (GMT 0)
Folic Acid worked wonders for me. I take 400 mg a day. My hair had
started falling out last year post surgery (and/or post going off Humira :).
I have multiple new hairs that are about 3 inches long now.

HTH
Sudsmom
Posted 8/19/2012 6:12 PM (GMT 0)
Okay good to know. Thank you. I've learned that if I very gently wash my hair with low water pressure it helps with the handful clumps coming out in the shower. I like the idea of taking folic acid anyway just in case I want a baby in the sometime near future :).
Posted 8/21/2012 5:26 AM (GMT 0)
I have come to accept the fact that I can replace my hair, not my body!! Although heart breaking, I can deal with my hair better than my illness... Hope all goes well!!!
Posted 8/22/2012 6:21 AM (GMT 0)
Here's what my doctor told me. Most hair loss occur rs after the fact. Think back a bit, and ask yourself if a couple months or more ago you were in a flare, if you had an infection of some sort, some major stress or trauma? What happens when your body is fighting off something, it normally shuts off nutrients to the hair and nails and puts all it's fight in the area of inflammation that needs help the most. This type of hair loss normally isn't permanent and I was told that hair will usually grow in thicker than before.
If it's medication related, then I think either your body needs to get use to the medication or it needs to be stopped and your hair should stop falling.

Incidently, Imuran may also cause hair loss in some in the beginning.

Post Edited (dorri) : 8/22/2012 12:24:41 AM (GMT-6)

Posted 8/22/2012 12:51 PM (GMT 0)
Thanks Dorri. I did have a string of infections before the hair loss started. The infections pretty much all cleared up. Now I'm just waiting for the hair to stop falling out. That'd be great if it grew back thicker! and Darker! with beautiful soft waves...lol!
Posted 8/26/2012 2:36 PM (GMT 0)
I had signifcant hair loss with Imuran. I couldn't didn't have the enzymes to digest the metabolites. Got a new GI and he switched me to Pentasa and the hair loss stopped. He said over a long period, the hair loss could have become permanant.
Posted 8/26/2012 5:06 PM (GMT 0)
Aw Salubrious, that happened to me twice over the course of the past 7 years after bad Crohn's flares. I asked my drs, my GI, my dermatologist and no one had a definite answer on the WHY but it did seem to keep the same pattern, all along the perimeter of my hairline I had hair loss. Some of their answers were it's the Crohn's, the stress, the lack of nutrients you're absorbing when going through a flare, the prednisone, the (insert other RX you were taking at the time), etc. The GOOD NEWS is that your hair WILL grow back. The first time it happened I would brush my hair after taking a shower and strands of hair in bunches would come out with my brush. I have long hair too so it was obviously upsetting to see. I took biotin and after my hair stopped falling out would give myself scalp massages to stimulate the hair follicles. Good luck! It's like Crohn's isn't hard enough to deal with on it's own, it has to through in all these other crazy side incidences, right? :)
Posted 7/11/2014 3:09 PM (GMT 0)

sudsmom said...
Folic Acid worked wonders for me. I take 400 mg a day. My hair had
started falling out last year post surgery (and/or post going off Humira :).
I have multiple new hairs that are about 3 inches long now.

HTH
Sudsmom

hi, I have RA. I also get very tired. I thought it was brave of you to say that you nap when you feel tired without guilt. That's how I feel. I used to fight it. Now, I know that I need to lie down if I feel tired. NO GUILT.
Posted 7/12/2014 12:52 AM (GMT 0)
I have gone through periods of hair loss and breakage and now take Biotin and Folic Acid. I also like to use shampoo with mint and biotin in it.
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