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09-02-2011, 02:36 PM   #1
toomey2
 
Join Date: Jun 2011
Imuran and Hair Loss

I was searching through the old posts and I know this has been discussed before but I would like to bring it up again since I am just now starting to experience it. I know that hair loss is a side effect of imuran. My doctor increased my dose a few weeks ago and I started losing hair in little chunks in the shower and brushing my hair while its still wet. I am hoping my doctor will lower the dose back down to what I was before but I doubt it since there was something in my blood test that made him increase it to begin with.

The nurse of my doctor told me some ways to help are to not wash it everyday, brush it with a wide spaced brush, and don't use anything on it like sprays, hair dryer, etc. I was just thinking how unrealistic that is (for those of you who have jobs and have to look professional for them, no blow drying? no straightening or curling? I wouldn't have my job much longer after that!)

I guess my question is, for those of you who had this experience before how much hair should I expect to lose before it stops? Or should I expect to lose all of my hair?? Because if thats the case, that is completely unexceptable! Was there anything anyone did (like some people are saying is a B12 inefficiency) to make it stop? And lastly, if I do stop imuran would it grow back or am I losing it for good? Thanks.
09-02-2011, 03:18 PM   #2
leithcote
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I'm on the related compound 6-mercaptopurine. Luckily for me, I haven't had any noticeable hair loss - which must be a little disconcerting. Are you on a particularly high dose - I'm on a reasonable 75mg a day. As far as I'm aware, any hair loss is strictly temporary, and once you stop the Aza, or reduce the dose, your hair will grow back.

Best wishes, Tony.
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Tony

Crohn's - predominantly in the terminal ileum - diagnosed Oct 2010
Ileocolic resection - February 2012
Current Meds - Pentasa granules, 2 g sachet daily.
3 monthly B12 injection. Iron and Vitamin D supplements daily.
09-02-2011, 03:25 PM   #3
ThanksP
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Once you stop it, it will grow back. I stopped 6MP over a month ago and my hair is still falling out in HUGE amounts. I have half the hair I used to. I only wash it twice a week, I always wear it genty put up with a clip (no elastic bands), try not to brush it if possible, or very gently, I use Nioxin shampoo, take Biotin, I juice specific recipes for hair growth, and I never blowdry or flat iron like I used to. I hope this hair loss stops soon.

Makes me sad because I used to have such pretty, and thick hair.
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09-02-2011, 08:29 PM   #4
georgiegirl
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Glad I looked at this today - I have some info that will help you. I was on Imuran for around 5 months and after complaining about hair loss to my GI, he switched me to 6MP. These are basically the same drug once they are metabolised, so I don't know what he thought would change. It did keep falling out.

Now, I had very thick hair, and I think I lost maybe 1/3 - 1/2 of it. Since the drugs were working for the crohn's, I stuck with it, and I would say after about 8 months all up (Imuran and 6MP) it very definitely slowed right down. Probably back to a normal amount of hair loss.

During the worst of it, I cut back to washing my hair about twice a week, started taking biotin (only around 300mg a day, and this was after the hair loss had slowed - I don't claim it is what stopped the hair loss) and use a good shampoo (but not Nioxin or anything). I def didn't stop blowdrying.

With all this new hair growth I'm looking a bit frizzy these days, but I am not complaining! I haven't yet heard of anyone who lost basically everything, so if the drugs are working, keep on them if you can!
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Diagnosed: August 2010.
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6-MP (150mg / day)
Tried:
Humira - worked for 6 months then just stopped
09-07-2011, 03:33 AM   #5
Tired of Hurting
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Has anyone experienced hair loss after ramacaid? Huge clumps of my hair comes out when I brush my hair but also if I simply run my hand throug my hair...I hate hurting real bad but I really don't wanna be bald!
09-16-2011, 11:37 AM   #6
InkyStinky
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Hi there, Tired of Hurting! Sorry to hear your hair is falling out - I always get some hair loss after a flare/prednisone, but I'm not familiar with remicade and hair loss. On this forum, under the "treatments" there's a subforum for "remicade" - if you search for hair loss there you might find some helpful threads.

Also, there is a "your story" forum - if you go and post an intro to you/your disease/treatment/worries/etc, more people will see it and can help you out!
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Sabrina
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
01-31-2012, 10:59 AM   #7
lulu2
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Hey guys

Im about to start Aza and im really worried about the hair loss side effect. How long does it take hair to grow back after u stop the drug??? Does it continue to fall out? Very worried.....

xxx
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Currently LOVING my job!!
Currently NOT loving my crohns!!

26 yrs old.
Currently taking: prednisolone 30mg/day, Azathioprine 25mg/day then 50mg in 2 weeks (well actually I've temporarily wimped out of this) 8g pentasa a day, folic acid and various cardiac meds.

Any advice I give must never ever ever replace the advice from your own doctor and care givers. They know far better than I do!
01-31-2012, 12:29 PM   #8
maria
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Im not on those meds but since my illness I have half the hair I had.
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Ileostomy from UC but doctors are now thinking crohns. Since Feb 14, 2011


I want to find a friend here in vancouver, washington with a stoma... I feel lonely.
Trying to stay gluten free.
02-29-2012, 04:54 AM   #9
Shonten
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I don't take Imuran, but do take Asacol which also causes some hair shedding. Your hair is not going to fall out in clumps, but shed alot. I've been using Matthew gardsen method for some time and I have seen a lot of new hair growth. Also Biotin is helpful for your hair too. I think you will be fine.
05-26-2012, 02:11 AM   #10
trac284
 
Join Date: May 2012
Location: Winston Salem, North Carolina
I was diagnosed with crohns in Feb. and put on 50 mg Imuran and remicade. I am losing my hair in clumps. My Dr. thinks it is the Imuran so he took me off of it 10 days ago. It could take a month or more before I see any difference, I have several large bald spots now and have had to get a wig, if it continues at this rate I will be completely bald before it stops. I would already be bald if I didn't have really thick hair to start with. The draw back for sopping the Imuran is that without it my body could develop antibodies to the remicade but for me I don't want to be bald so I will take the chance and pray my hair comes back.
12-13-2012, 06:50 PM   #11
Jaffa71
 
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I have just started on Imuran 50mg 3 days ago and am also on Pred 50mg. Just wondering how long did it take before you started to lose your hair. Was it immediately or did it take a few weeks/months. The more I read about this drug, the more concerned I get but I do understand that if it works for me then the benefits of the drug will definately out weight the side effects.
12-13-2012, 08:59 PM   #12
Catherine
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Sara had some hair loss at the begining of treatment but I think it more due her being so under weight (12 kg losted in 2months). Her hair has grown quite a lot longer this year after hardly growing for years.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-14-2012, 05:39 PM   #13
nitty
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Hi!

I'm on Aza and Mezavant, and I'm losing a lot more hair than I used to. Going by the timing of things I certainly think it's the Aza that's responsible.

At my last trip to the hairdressers I had my hair cut to a shorter, easy style (it was previously mid - long) so that it looks less straggly and I'm not stressing the roots by tying it back. I also went without my usual colour in case that irritated my scalp, so I now have some natural silver highlights!
Reassuringly, my hairdresser could see that there is loads of new hair coming through, so it is at least being replaced quickly.

I only wash my hair every three days (the longer you leave it, the less oily it gets after a while), and I use Batiste dry shampoo if I need it to look better for an extra day. The dry shampoo also helps it look a bit thicker (but less shiny).

I reckon I'll be on the Aza for a couple of years at least, so I figured I just have to adapt as best as I can - it's better than the option of getting sick again!
08-21-2017, 10:24 PM   #14
spencerlam
 
Join Date: Aug 2017
I also experienced horrible hair loss when I started taking Imuran. And also I had no appetite for any food. No one can actually help. I cut my long hair and changed my shampoo to hair-loss-prevent type. It helped a little bit. But after around 3 month, situation gets better. I am not sure whether it's because I stop taking Prednisolone at the same time, or maybe I just get used to the side effect of Imuran. Hope this helps any patient is experiencing or will suffer.
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