My 11 yo daughter was just diagnosed with Crohn's. She has taken steroids, been iron deficient and is currently on azathioprine. She is losing her hair rapidly. I have cried all night for her, but don't want to scare or say anything to her yet until I have it figured out. She just keeps mentioning that she's losing her hair. A book on IBD said that azathioprine and iron deficiency causes hair loss. Has anyone had this problem. Is the hair loss problem permanent, will it go away? She's supposed to take azathioprine for the rest of her life. She hasn't even gone through puberty yet and I'm trying to figure out how to steer her through it positively with all the Crohn's changes she's going through. Any thoughts would be appreciated.
Reply posted for MLM.
My daughter was in the hospital when we started 6MP. Her inflammation and bleeding were severe and she had mouth sores, granulomas and aphthous ulcers throughout her digestive tract from top to bottom, skin tags and sores on her little bottom. This was not our first autoimmune problem, unfortunately. Anyway, she was slow to respond to steroids and from a problem with a past biologic, TNF blockers are not an option (like Remicade). There is definitely a risk with all meds but for us we had to balance the risk with the benefits.
The 6MP has controlled both her sets of issues and for that, we have been so thankful. In our instance, the benefits are many. Her quality of life is great and she is doing well, eating a healthy diet (well healthy for the most part :-)). Now why did he choose 6MP over Azathioprine? I have no idea.
In all my posts, though, I say you gotta have a good relationship with the doctor and be comfortable with the plan. Not every kid or patient responds the same way to the same regime. I don't believe there is a one size fits all for IBD. So I think your plan to take your concerns to the doc and talk options is the very best plan you can have!!
Please let me know if I can help.
Claire's Mom
Reply posted for AZMOM.
Thanks for the post. I just finished reading a book on IBD, written in 2010 and the author doesn't recommend azathioprine or immunosuppresants in patients under 20 because of the chance of T cell lymphoma which can be fatal because it does not respond to chemotherapy. The chance is small however, but still there. We'll be meeting with my daughter's doctor next week and I want to ask him about that. Do you know why your doctor prescribed the meds your daughter is taking? I would like to consider an alternative to azathioprine, but don't know what else to suggest. I will have him check her numbers and see if it's the iron. She has been iron deficient. thx.
Reply posted for MLM.
We haven't used that med, but I would definitely call the doc to get new labs and see where her #'s are. The only experience I have with hair loss is when a friend of mine was nursing and it started coming out in clumps. A quick call to her doc and a visit to the health food store and her body was back in balance. Good news, her hair came back and you'd never know the difference. Hopefully there will be an easy fix for your daughter too!
Lizzies Mom
Reply posted for MLM.
Hey - my daughter is on mercaptopurine (6mp) which is similar to azathioprine....but a little different of course. We have not had any hair loss. I can only imagine how that worries you (and her of course)!! Have you talked to the doc at all about it? Are her labs normal other than the iron? I know with 6mp we have plenty of lab visits to be sure the dosage is still therapeutic. I'm hoping for you that it is due to the iron deficiency and maybe once that is corrected, it will stop.
I know I'm offering zero real answers but know that I am sending plenty of prayers and empathy your way.
Claire's Mom
My son has Crohn's and is currently in jail. T....
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