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09-10-2016, 01:57 PM   #1
GirlwiththeCurl
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Hair loss

Hi!

So L has been on azathioprine for about fifteen months now. Over the summer she was diagnosed with ADHD and started on Concerta, with approval from her GI/Hep. At her appointment we pointed out that L's hair was falling out easily, and they ran bloodwork to check for thyroid issues, which came back totally normal). Since starting Concerta, L has been calmer and more focused, but we have noticed an increase in fidgety behavior, especially hair pulling. In fact, she is pulling hair out and has created a noticeable bald spot on her crown. We stopped the Concerta and called her pediatrician and the GI. The hair pulling (which is really just her combing her fingers through her hair) is probably a side effect of the Concerta, but I am concerned that her hair just comes out in thick wisps when she does this--that is not from the Concerta. I know azathioprine lists hair thinning as a side effect--but is this excessive?? I'm worried that I ought to be more worried about the azathioprine than the Concerta.

I'm going to call the GI again this week, but if anyone has any experience with azathioprine and hair loss is love to hear it.
09-10-2016, 02:15 PM   #2
Maya142
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We have had hair loss when my daughter was first put on Azathioprine. It was pretty significant - her hair became noticeably thinner. You could really tell, especially when it was braided or in a ponytail.

She wasn't pulling it out, but a lot fell out every time she showered or brushed her hair.

Over time, the hair loss just stopped. I have no idea why. We did add Biotin which her rheumatologist suggested. Something helped -- I don't know if it was the Biotin or just time. We have since stopped the Biotin and her hair is not falling out. It's definitely still thinner than it was but not too bad.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-10-2016, 05:14 PM   #3
Farmwife
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Were having this issue right now with Grace.
She's on Aza also.
Her hair is almost to her waist . So when it falls out you notice it!
No other symptoms yet.
I know drug induced lupus can happen with these drugs, I'm keeping a close eye on it.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-12-2016, 06:26 AM   #4
sickmom
 
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My baby went through a stage when she was pulling her hair (and mine) thinking it was fun. She did not seem to hurt at all when she removed locks of hair from her head and she never had a lot of hair to begin with. I think this went on for a few months and then she stopped doing it. Her hair is okay now, thin but ok.
09-12-2016, 10:04 AM   #5
GirlwiththeCurl
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Thanks, everyone. I'll check on the biotin. Even though I haven't seen L pulling her hair for a few days now (since stopping the Concerta) her bald/very sparsely covered spot is getting bigger. Bah humbug.

The Concerta was making a difference at school, too. I might see if I can get her a fidget toy for the classroom to keep her hands busy.
09-15-2016, 03:42 PM   #6
GirlwiththeCurl
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Quick update: L's GI says she doubts hair loss is occurring as a side effect from azathioprine, since she's been on it so long already with no hair issues. However, she ordered bloodwork to test azathioprine levels and also for zinc deficiency.

I consulted Dr Google which suggested scalp ringworm. In fact, her hair loss pattern and scalp appearance look a lot like the gray patch ringworm pictures on the internet, and she is constantly scratching her scalp there (despite her saying it doesn't itch), but her pediatrician says she is sure it's not that (we live in a really dry area, and she says they almost never see ringworm) since her scalp isn't reddened. Had anyone had/seen scalp ringworm? I understand L is higher risk for it since she is on azathioprine.

Maybe I'm just grasping at straws.
09-15-2016, 03:46 PM   #7
GirlwiththeCurl
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The pediatrician did if the bald spot grows bigger they will refer her to a dermatologist. :/. While bald spots are not the end of the world, I am not excited about navigating the social consequences of bald spots on a seven year old girl in school.
09-15-2016, 05:18 PM   #8
my little penguin
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I would try to see the dermo sooner rather than later since your dd has chronic conditions and immunosupresants that may cause skin stuff that most peds never see
Our Ped told us Ds just had a rash and not to worry about no matter how many times we asked
It was sweets syndrome - dx quickly by the dermo

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09-15-2016, 05:37 PM   #9
GirlwiththeCurl
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Thanks, my little penguin. I think I'm going to wait for the blood work results, but if they are normal I'll ask for a derm referral right away.
09-15-2016, 06:00 PM   #10
pdx
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Yeah, I agree about asking for a derm referral. My daughter had some scalp stuff going on last year, and I thought it might be ringworm or some other similar fungal rash. Her pediatrican and her GI doctor both looked at it and had no idea what it was. We got a derm referral, and the dermatologist knew what it was right away. She actually had two different things--a rapidly growing birthmark that needed to be removed, and psoriasis, which we've been able to treat with a topical steroid. Hope you get some answers soon!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-15-2016, 06:34 PM   #11
Maya142
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I'd definitely see a dermatologist. It could be something that is easily treatable.

My kiddo used headbands when she had a mole removed from her scalp. Would those work for your daughter? I'd look for a wider one that covers as much as possible. Just so school is easier while you're looking for a solution.
09-15-2016, 06:56 PM   #12
GirlwiththeCurl
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I think her bald spot is too far back to be covered by a head band, but I'll keep my eyes open for some really wide cloth ones. I've been putting her hair back in a pony tail, partly to cover the spot and partly to keep her from pulling at her hair.
09-15-2016, 07:08 PM   #13
Maya142
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Not sure how long her hair is, but if it's long enough, a french braid might work. It might be a pain to do with a kid that young though, especially before school!

We got wide lace head bands and those worked well but we had to cover the front, not the back.
09-15-2016, 07:38 PM   #14
Ranchmom
 
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Thanks, everyone. I'll check on the biotin. Even though I haven't seen L pulling her hair for a few days now (since stopping the Concerta) her bald/very sparsely covered spot is getting bigger. Bah humbug.

The Concerta was making a difference at school, too. I might see if I can get her a fidget toy for the classroom to keep her hands busy.

Sorry you lo is having issues with her hair loss as well as an ADHD diagnosis. I have lost different amounts of hair depending on my medication over the years. I am on Stelera now and am losing a significant amount since starting.
As for the Concerta, my son takes it as well and it is a life changing medication for him! We went from a couple phone calls a week from the school regarding impulsive behaviour from kindergarten to Gr 3 to starting Concerta and seeing an immediate improvement socially & behaviourally. He was also below grade level in all classes but last year he made honor roll (gr5). We chose Concerta because it does not need to build in his system which allows us to have "days off" from the meds so we can see how he is doing without the medication. If you chose to keep her off it I would suggest asking her teacher to place a bungy cord between the front legs of her desk (she can bounce he feet on them), we also make fidget balls (fill an uninflated balloon with flour & a couple teaspoons of white glue), she can squeeze it in class. Ds teacher also allows him to leave class and go for a walk up the hall and back to refocus him. Even on the Concerta we still do all these things at school and the teachers see more improvement every year! Good luck, ADHD takes some work but with teachers willing to work with you you will see improvement
09-15-2016, 09:03 PM   #15
GirlwiththeCurl
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Ranchmom--thanks! Our ped actually recommended increasing her dose of Concerta, because she has seen in some kids that if they aren't getting quite enough they tend to get anxious and fidgety. So we are trying the next step up (starting tomorrow, in fact). We should be able to tell in a couple of days if that is helping or hurting the fidgeting.
09-15-2016, 09:23 PM   #16
Ranchmom
 
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Ranchmom--thanks! Our ped actually recommended increasing her dose of Concerta, because she has seen in some kids that if they aren't getting quite enough they tend to get anxious and fidgety. So we are trying the next step up (starting tomorrow, in fact). We should be able to tell in a couple of days if that is helping or hurting the fidgeting.
We also started DS on the lowest dose but it lost its effectiveness very quickly, about 2 weeks. We increases to the next level and he has been on it ever since (2years now!). I love that he is just a better version of himself on it. You'd never know he was a medicated ADHD child because he is still ALLLL boy (rough & tumble!lol) but doesn't go overboard like before. I also love the fact I can not give it to him on a Saturday so I can see if he is improving on control himself without weening & rebuilding in his system. I was very very hesitant to medicate him but it was the very best decision I have ever made FOR HIM.
10-19-2016, 06:42 PM   #17
sickmom
 
Join Date: May 2016
Location: Greece
My daughter has been losing a lot of hair lately and doctors think it's because of low hemoglobin. I asked about possible medication side effects but they think more likely low iron and anemia.
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