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For those who started losing hair on Imuran

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Posted 8/18/2014 2:44 PM (GMT 0)
I started Imuran almost 8 weeks ago, and just recently my hair is starting to shed a lot more when I comb it or wash it. I had this happened with Methotrexate too, but I believe it eventually stopped. For those who have also experienced this, did it eventually stop, and if so, do you remember when? Thankfully I have a thick head of hair, but I have read some stories of people who lose so much hair they have to get a wig. I'm praying that's not the case for me!
Posted 8/18/2014 2:58 PM (GMT 0)
I didn't notice any hair loss until the very end of me taking imuran. I think I was on it for around 3 years before I noticed any thinning/loss of my hair. I'm a male though and it was on the front of my head, like most men I guess. Once I stopped imuran (not for this reason) everything was back to normal again.
Posted 8/18/2014 3:58 PM (GMT 0)
Thanks for sharing your experience, Cavalier. Do you mind my asking why you stopped Imuran? I see you're med free, can I ask how you're doing and if you're doing anything in particular to stay well? I've been on many meds and different diets, and I hope that Imuran works for me, but I also like to hear other people's ways of staying well without meds. I'm willing to try just about anything. :)
Posted 8/18/2014 4:10 PM (GMT 0)
I stopped because my blood work numbers (white blood count) were not up to par. They were in range but barely. I also had other symptoms like skin problems that were developing and a lot of nausea. Also, my GI suggested I go off of Imuran to see if anything changes and to see if that was even the thing that was keeping me in remission. Other than a mild flare or two, that I believe were due to colds, I have been fine off of Imuran. Right now I am feeling just fine, although I know that can change at any point. I am taking vls#3 right now as well as L-glutamine and bee pollen/propolis. At some point I will probably want to go on a maintenance med such as asacol or pentasa, for peace of mind. Hope you find something that works for you Octobergirl!
Posted 8/18/2014 4:15 PM (GMT 0)
I don't remember when it stopped but I had some hair loss too. I have very long hair and I noticed it every time I took a shower. I'm glad it stopped.
Posted 8/18/2014 5:14 PM (GMT 0)
Cavalier,
Sorry to hear about your side effects. I'm glad you have a pretty open-minded GI to suggest you see what is really keeping you in remission. I'm glad you're doing well, and thanks for sharing your current routine. I don't blame you as far as being on a maintenance med. I'd be fine with being on an ASA for life if that's all it took to keep me in remission. Hope you stay well!

Andrina,
Good to know that it stops. I'll just deal with it now and hope it doesn't get to the point where it becomes noticeable.
Posted 8/18/2014 5:49 PM (GMT 0)
lol...It stopped when I stoped taking Imuran. I have fine hair. TONS of it since it's long. But fine. So when it was coming out, I kind of freaked. But when it lowered my numbers - platelets, WBC, etc., it really came out.
Posted 8/19/2014 6:46 PM (GMT 0)
I just posted a question about hair loss today. Mine started when I started Pred in December, 2013 and continued when I stopped Pred and started Imuran but as of April of this year I have been off of both meds and the hair loss hasn't stopped so I'm going to see a doctor. Mine sounds like yours (I have thick hair too): it's not a lot all at once but I can definitely notice that my hair is thinner. Sorry I don't have a more reassuring story for ya:(
Posted 8/19/2014 9:14 PM (GMT 0)
Sibby,
Sorry to hear about your issues with Imuran and the hair loss. I'm glad it stopped though once you got off it.

UC since 98,
Oh no, I'm sorry youth air loss hasn't stopped yet! I have heard Imuran stays in your system for a while, but then I don't know how long. I hope it stops soon. I'm also on prednisone right now, but I've never experienced hair loss from prednisone before, so I know it's the Imuran. I'm going to ask my GI next time I see him if he knows of other patients who had hair loss and how bad it got. How much do you think yours thinned? Keep us posted on what the doctor says.
Posted 8/22/2014 11:45 AM (GMT 0)
I have been on Imuran for almost 15 years.

Yes, some of my hair fell out initially. But, it always grows back. Just give it time and dont freak out!

The hair loss is not permanent its just your body reacting to the new drug in your system. I think after 6 months of being on Imuran it started to grow back. Now, whenever I adjust the drug dose, it makes no difference to my hair.

Take care
Posted 8/22/2014 4:07 PM (GMT 0)
barnsbury,

Thanks for the positive note! I will try and not freak out, and it's good to know yours stopped falling out and grew back. I'll just be thankful that I started out with thick hair, so I'm hoping it won't even be noticeable.
Posted 8/23/2014 3:00 AM (GMT 0)
Mine has thinned a lot but no one else has noticed except me and my husband, who recently commented on the amount of my hair on the floor, lol.. When I spoke with the nurse this week she wasn't too concerned. She thinks it is my body reacting to the trauma of going through a bad flare.
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