New here - a Hello and a question

HI everyone, I'm new here.  I'm 29 years old and I was diagnosed with crohn's disease in 2009 after about 5 years of misdiagnoses.  I had a laproscopic ileocecal resection this past June due to severe strictures and have been doing well since.  I am currently only taking 150 mg of Imuran.

I've been back on Imuran for about 3 months and just started noticing that I am losing a lot of hair. I notice it in the shower and when I brush my hair in the mornings.   I've read this is a side effect of Imuran but I'm curious to know if this stops if the medicine stops and if the hair lost ever grows back?

I'm actually seeing my GI this afternoon and plan on asking him about it.  I'm also interested in possibly changing to a 'safer' drug..  My husband and I are on the 'if it happens it happens pregnancy plan' so I'd like to find a drug that would be a bit 'safer' for a possible baby. 

I look forward to interacting with you all - I've found that no one understands what a crohn's person goes through.. unless they are a crohnie themselves!

Thank you for the welcome Nanners! I looked back and I realized I left out a few things! I also have gastroparesis and since the cecal valve was removed with surgery I'm on questran power.. Really wanting to ween off of it!


Any links or research I can print and take to my doctor would be great... my doc is pretty good to research and study things I ask him about. I've read mixed reviews on imuran and pregnancy.. I just want to try to make the best informed choice about if I stay on it or not.


Nanners - in your signature it says your joints are going crazy and you're in remission from Crohn's... is this common? I've noticed more and more my joints are different since my surgery. I can't put my wedding bands on until mid morning.. and my first few steps out of bed.. my heels feel so strange until I take a few steps and my body "warms up." I have a knee acting up as well.. but I believe that's because I was pushing myself too hard running and at the gym.

I doubt I saw this is time for you to get the printouts to your doctor. But I will list them anyway. First, about 6 years ago when I began Imuran, my hair started to thin a lot. I did research and found a legit source that stated Imuran is a folate antagonist. That means that it interfers with absorption of folic acid. I took my research to my doctor and he prescribed Folic Acid 1 mg daily. It is very important though to have adequate B-12 absorption or the extra folic acid can mask a severe B-12 deficiency. I had low B-12 too so I also began B-12 supplementation. This did help with the hair loss but the texture of my hair was different. It seemed much more fine than before the Imuran.

http://my.clevelandclinic.org/transplant/services/lung/azathioprine.aspx

http://www.medicinenet.com/azathioprine/article.htm

After 6 years on Imuran, I had to stop taking it due to the severe chronic anemia it caused. Five months after stopping it my hair is noticably thicker than before.

Thank you Ides! Do you by chance have the research where you found that Imuran is a folate antagonist? I'm going to fax over the info to my doctor and I'll also ask him about checking my B-12. He did prescribe me 1mg of folic acid yesterday because I talked to him about having a baby, so the folic acid will help 2 fold. I was letting my hair get longer but I read one of the articles that said I might want to have it cut short - did you cut your hair shorter?

Thanks for the welcome monkiray!

How much folic do you take?

And thanks for the welcome... I've tried other support forums I've found and this one seems to move at a quicker pace and you get good educated responses...and that's something that I really like.

Becktoria said...
I must have been very lucky- I have been on Imuran for over 12 years and have not yet experienced this side effect. In fact I didnt realize it was a side effect. However I have been taking folic all that time as well... oh and welcome to the site!! Since I found it a few weeks ago during this recent flare I have become more informed and more at ease with this disease. I felt like a newly diagnosed person who had no clue about crohns despite having it since I was 20. I never realized what a help and what a difference a online forum could make but it is amazing.

:)

B