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Hair loss?

Alrighty.... I'm having major issues and I think it's because of Imuran. I quit taking it about a week ago... and now my dang hair is falling out. I wake up in the mornings with gobs of it on my sheets, and handfuls when I get out of the shower. I've read about the side effects of being ON Imuran, but I'm OFF of it. Why don't companies tell about those side effects? :ymad:

Has anyone else stopped the Imuran and had hair loss? I've called my doctor and he's supposed to call me back. I really don't know what else it could be. I'm not stressed. I've been feeling so much betterr now that I've had a Remicade infusion! I just don't want to go bald!!!
 
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Kev

Senior Member
Hi Tina.. Welcome to the forum. sorry about the hair loss issue. I was also on Imuran... was allergic to it, suffered severe pains in legs & back, broke out in a rash that covered those areas. Anyway, long story short, I had to come off it, and the pains went away in 2 - 3 days, but the rash took much longer to fade.
I didn't have any hair loss, but in my case, I would have welcomed it, as my hair is way too thick. I haven't heard of this side effect before, but maybe someone else has. Are you taking any other medications besides Imuran?
 

vickyoddsocks

wears odd socks
Since ive had crohns ive noticed massive hair loss. I used to have really thick 'unruley' hair, but now its quite thin and flat. I'm not too sure what imuran is but i put mine down to a number of things; Steroids, azathioprine, anemia, and just generally being unwell. I suppose i was fortunate to have thick hair in the first place else i might have non left now! lol! I doesnt tend to fall out anymore now, but has never grown back to what it was. Hope that helps!
X
 
Tina...

Hi! I used to be on Imuran like you, and I lost a TON of hair. I stopped taking it about 4 months ago, and I've noticed a slowing in the hair loss, but I'm definitely still losing. However, like I said, when I was on Imuran... it was HUGE hair loss.... GOBS OF IT. After Imuran, I went on to Remicade... I did that for about two months, and now I'm on Humira. So I'm not quite entirely sure whether those rugs contribute to my hair loss now... but I was also told that after coming off of Imuran, it would take several months to get rid of the side effects. Hope that helps!
 
these drugs are a type of chemotherapy. have you ever heard of people losing their hair when on chemo for cancer? the reason is that the medicine targets certain cells in the body to kill, some of which include stomach cells, intestinal cells, and hair follicle cells. these particular types of cells are easily susceptible to being killed by the chemo and because the imuran has a build up effect in the body, it sits there for months and continues regulating these cells which can in turn lead to hair loss.
 
Might take a while for the hair loss side effect of Imuran to wear off, but you should definitely tell your doctor about it either way.

Hair loss was just one of the many reasons I never started Imuran, against my doctor's suggestion. The other was my family history of cancer. I read the possible side effects and didn't think it'd be a good thing to take with the history of cancer in my family.
 
I

Ilysha

Guest
I had something similar happen with Prednisone. My hair started falling out about 2 months after I stopped taking it. My hair dresser said he sees that happen quite often with Prednisone. I suppose it could be the same for Imuran as well.

Nioxin shampoo and conditioner work incredibly well to help it grow back quickly. You should be able to get it at any good beauty supply store.
 
I've lost quite a bit of hair too. I used to have thick long hair, now I'm considering cutting it all off because it's getting so thin. I'm on Immuran at the moment.
 
Well I'm not on Imuran nor have I ever been and my hair constantly falls out. Some days more then others.Now I just don't bother brushing only when I wash it.Which is every 5 days and in between I use just cream rinse to slow down the hair loss. My hairdresser said that you shouldn't wash your hair every day because you wash out some kind of chemicals that your hair needs.No your hair dosen't look or feel greasy from cream rinse.
Still my hair falls out. I think its a Crohn's thing and being on pred.

Tammy
 
me too :(

although until reading this thread just now, i didnt connect my hair loss to crohns or predsol. i've spent the last few months wondering if its my imagination that my hair is thinner than usual - but i am sure it is now.. and the shower plug confirms this. i assumed if anything, it was due to me just being run-down and not too well. thanks for this thread all of you, even after 20 odd years since diagnosis, i am still learning about crohns and its 'delights'...
 
C

ccarp001

Guest
i am on Immuran, and my hair has thinned. i have probably 70% of what i used to. however, the good news is that, for me at least, the hair loss reached a certain point, and stayed there. i am NOT slowly going bald, as people do on chemo.
 
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avaifyseapy

Guest
Whats Your Favorite legal, illegal, or Perscription Drug?!?!?

I'm honourable wondering, but does anyone else undergo that [Content edited by moderator] are cast-off to reveal the total these days?
For an overactive stripling Ridallin is like a nessessity...I believe that our enlightenment revolves far too much about drugs. Does anyone from any thoughts into this topic?

[Content edited by moderator]

NOTE: Embedded links have been edited by moderator Kev. Anyone wishing to obtain this info is asked to PM the poster.
 
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avaifyseapy said:
I'm honourable wondering, but does anyone else undergo that [Content edited by moderator] are cast-off to reveal the total these days?
For an overactive stripling Ridallin is like a nessessity...I believe that our enlightenment revolves far too much about drugs. Does anyone from any thoughts into this topic?

[Content edited by moderator]

re: your link - it is a treatment for Asthma. i'm wondering if you may be in the wrong forum ;)
 
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K

karl

Guest
yeah, i just kind of noticed that mine is falling out today. i've been taken pred for about a month and aza for about 2 months.

its alright, i knew it would fall out eventually. it runs in my family anyways and i'm a geek - so being bald is the norm
 
S

SophieL

Guest
I've been on aza for 3 months and haven't noticed any drastic hairloss, no clumps coming out in any case, but certainly my hair feels thinner than it used to. Might just be because I know it's a common side effect though.

From what I've been told, the hair loss is a mixture of being immunosuppressed and simply having an autoimmune disease which will take a lot out of you in any case.
 
well i thought it was the pentasa causing my hair loss, I'm obviously wrong! must be ta mixture of this horrible diease and the constant doses of pred :(
 
Mine started falling out at the onset of the crohns disease the only thing that slowed it down was the Pentasa now that I am off the pentasa it is falling out again like crazy. I think it may just be the disease.
 
One of the most common causes of hair loss in crohns ( and thr general population but more prevalent in crohns due to chronic blood loss and inflammation and poor absorption) is ferritin deficiency(iron). Even if your levels are borderline low it causes hair loss . It should be 70 or above to allow hair regrowth.
 
I have a co-worker whose hair grows unbelievably fast. One day I asked her about it and she said that the secret is to take pre-natal vitamins. Then I remembered when I was expecting, that my hair was the longest it has ever been. I took her advice, and was surprised to see how fast my hair suddenly grew. I'm not an expert - but just wanted to share that. Another co-worker just tried it and the same thing happened with her.
 
My hair fell out from high doses of Asacol about 2 months after being on max dosage (4800 mg daily,) slowly reduced to 800 mg daily, started growing back within about 3 months and looks better than before, don't give up hope!
 
Hiya im on imuran for last 5 months on 200mg and i noticed hair loss to and was abit scared however my specialist was saying when you are seriously ill your hair stops growing and when you get better the hair cycle is out of order so decides to malt all at once.

He has never heard of people losing all of their hair or large amounts but it just getting dry and thinning out, just go easy on the hair dying and straightening and use conditioning treatments .

I have noticed my hair is going back to normal, hope this helps!!
 
Immuran & hair loss

I was only diagnosed in October 2010 but had symptoms for about 5 yrs.
Only been on Immuran for about 2 months & in the last month have had my hair falling out in huge clumps... I had thick hair when i was young & now you can see my scalp through my hair- loosing it in numbers, I hope it stops soon otherwise ill be bald.
Didnt notice the hair loss so much over the time, just now!!!
Im getting scared that it wil keep going & if I should stop the immuran???

Sharna
 
After a few rounds of pred. and starting Remi I started really loosing mine to the point where I just completely buzz it. Every male in my family has a full head of hair except me. I'm thinking it had to be because of the drugs.
 
I was only diagnosed in October 2010 but had symptoms for about 5 yrs.
Only been on Immuran for about 2 months & in the last month have had my hair falling out in huge clumps... I had thick hair when i was young & now you can see my scalp through my hair- loosing it in numbers, I hope it stops soon otherwise ill be bald.
Didnt notice the hair loss so much over the time, just now!!!
Im getting scared that it wil keep going & if I should stop the immuran???

Sharna
Hang in the there Sharna. My hair fell out terribly for months on Asacol (messlamine) I thought it was the drugs and so did my family doctor. I was afraid of going bald, my daughter actually bought me a wig. Initially I tried reducing my dosage, then my specialist thought the hair loss was a throw back to being very ill and he put me back on the higher dosage to prevent a flare up. He said your body stops growing hair when you are very ill and as it recovers, the hair cycle is out of whack so it sheds all at once. He said alopecia normally appears is in clumps as opposed to the whole head that was thinning in my case. I believe that happened to me. My hair is growing back, it's not that long yet but the new hair is good.
 
hair loss

Since I've had UC, I also experience alot of hair loss. I really took notice of it after I had my son. I was hospitalized for a week after my C-section for a bowel obstruction. I have also heard of "normal" women experiencing hair loss after having a baby & was instructed to take Biotin. It seemed to help after I was on it for a few weeks. Biotin is water soluble. I seem to find that if my B vitamins are low, I lose more hair. I go through different spurts. Some weeks, it might not be that bad. Other weeks, are awfwl. My hair is very thin & brittle. I'm sure it's from the absorption problems. Hope that helps.
 
I've had crohns for 8yrs now and have been on remicade, humira, cimzia, and now cyclosporen with imuran and bactrum. i took 6MP (another form of low dose chemo like imuran), as well as prednisone, methotrexate, asacol and pentasa in the past and never have i experienced hair loss, especially THIS amount of hair loss, before. ive been pretty bad this past yr so for the past several months, my hair was already falling out more than normal from my malnourishment due to crohns itself. i used to be huge hair w/ a tiny 5'2" girl attached to it but now that ive been on the imuran for a little over a month, even my hairline is thinning drastically to the point that i wore a scarf over my hair yesterday to go out. i told my doctor and he said that yes its normal, but ive heard that when cancer patients stop chemotherapy, sometimes their hair doesnt even grow back to same amount or even color as it was before. However, ill defenitely try the hair growth suggestions ive read in this thread... as well as what my eyebrow threading-friend suggested: massaging my scalp with catrol oil and leaving it in for atleast an hr before washing out.
 
Nioxin hair products

Thanks to a post on this thread, I decided to try Nioxin shampoo and conditioner. You can find it on amazon as well as pretty much any hair cuttery. If you go to the shampoo's site, you can fill out a quick set of questions and they will suggest which "number" is best suited for you. There are 6. What I liked right away from this product is that it is ENTIRELY made for hair growth. The woman at the salon I went to suggested also buying the intensive leave-in treatment and raved about the syrum, since she had had a very severe hair loss experience during her pregnancy. They're all very decently priced and the syrum truely is a miracle worker. in about a week and a half my INCREDIBLY noticable missing hair line was already half way filled in. I rub it into my scalp twice a day and it has no bad smell or oily texture. I'm very pleased and hope my cascading waterfall of enormous and thick curls come back ASAP. If the salon woman's locks serves as any indication of the products success, I'll be back to normal in a few months :)
Just as a little extra though, I have also been taking prenatal vitamins (I'm aneimic and have osteoperosis so i should have probably been taking them for yrs now).
 
My hair was thin to begin with. Taking AZA for the last 6 months and noticed the hair loss after a few months. The last thing I need is less hair!!! :eek2:
:cat:
 
Used to have glorious shoulder length curly white hair. It is starting to fall out at an alarming rate. Was taking asacol, prednizone, sulfasalazine, flagyl and hydrocodone. They may have slipped a couple I didn't realized while hospitialized as I was out of it with some prtty strong pain killers. Have also been put under anesthesia 4 times since the middle of July. Now on 6-mp and lialda preparing for remicade. I am not a vain woman, but my hair has been a hereditary wonder, passed down for generations in our family. it makes me cry when I look at it now.
 
I noticed that no one has commented here for a while, but I'm having the same hair loss problem and wondered if anyone has any advice.
My hair always falls out when my Crohn's flares up. It's one of my first symptoms. It took me a while to realize this. I eventually figured out that it's a vitamin deficiency. Or so I thought, now I'm not sure. My Crohn's had been in a mild flare-up for a year and a half. Last year I noticed that my hair was falling out, but didn't realize my Crohn's was flaring because I wasn't having the usual symptoms at the time.
Long story short, my GI figured out that I was in flare-up even though I'd never come off my regular medicines, and he added Remicade to the Imuran (been taking for 13 years) and Lialda (been taking for 6 years). So I've been on the infusions of Remicade since December of last year.
My hair had stopped falling out over a year ago, but started falling out again a few months ago. I'm talking about big thick locks of hair! Especially when I wash it. But anytime I run my hand through it, I end up with a handful. I have extremely thick hair, but this is beginning to freak me out!
I read some of the posts here. Could it be because the Remicade has built up in my system? I've been on Imuran for 13 years and never had this problem with it. I've never seen hair loss listed as a side effect to Remicade.
My GI thinks it's stress, and I am stressed, but I thought it was a vitamin deficiency. So I got my OBGYN to put me on a pre-natal vitamin just for extra help in that area. I've been on it for almost two weeks so it may not be in my system enough to make a difference yet.
Sorry this is so long, but if anyone has any suggestions I'd appreciate it.

Current Medicines:
Imuran
Lilada
Remicade (Every 8 weeks)
Pre-natal vitamin
Prayer :)
 
Bama
I'm also freaking out! The hair loss has now gotten so bad, I'm thinking about getting a wig. I've done all the research, gone to my GI and a dermatologist and can't seem to find any solutions. Causes are numerous, but cures are not. I even took myself off all meds including Humira because it's a possible side effect.
The last time I had a really bad flare and bowel resection this happened to the hair in other places on my body, but not my head. That hair NEVER came back! Had bowel resection 3 months ago, and now this is happening on my head.
Maybe I just need to vent, but is there ANYONE out there that fixed this problem?
 
Sorry for the slow response, I haven't been able to get into my email for some reason.
I understand your frustration. I've done all the research and found no solutions. I went for my Remicade infusion today and saw my doctor afterward. I told him about the hair loss again, and even showed him a picture of the hair I'd lost when I washed it. (Just happened to think to take a picture with my cell phone before I left this morning) He was shocked at the amount of hair that had come out in just one washing.
He asked about all of my medicines and said that none of them would cause that much hair loss. But then he got out a book that lists all the side effects of different medicines and found that Remicade can cause Lupus-like symptoms. Of course the only word I heard was LUPUS and immediately freaked out! LOL! But he said that it doesn't cause the actual Lupus disease, just symptoms that are like it.
So he ordered some blood work and I have to wait until Monday to find out the results. But I went online and did some more research and found that the Lupus-like symptoms happen when your body builds up antibodies against the Remicade. So that's what he's looking for in the blood work. I assume if that's what has happened, he'll take me off the Remicade and maybe switch me to Humira? I don't know.
I'm going to be waiting for an appointment with a colorectal surgeon, regardless. :( I've come to the point where the complications have become too much and something has to be done.
I don't know if this will help you, but it's an explanation I hadn't heard before.
I wish you good luck and good health!!
 
I have no solution either. I had a resection September 2012, am receiving Remicade every 6 weeks now, 6mp, Chlordiazepoxide/clidinium, Paxel, and Percocet for pain. I decided the hair was just something I would have to deal with for now. I would like to cut it short like Dame Judi Dench, but my husband prefers it longer. I'll add it to my widow's list. I find the Lupus-like symptoms very interesting. I have an exam with my GI in December and will ask him about that. For now, I am enjoying my 3 new grand babies (now a total of 3) and looking forward to the holidays!
 
Again, sorry for the slow response. I'm just about ready to toss out every electronic device I own! LOL!
I talked to my GI today about the results of my blood work. He said that everything was normal. No sign of inflammation, the Crohn's is in remission. (I already knew that) My problems now are from complications caused by flare-ups over the years.
Whatever he was looking for that would show that I was having a reaction to the Remicade was not there. So that's not the reason for my hair loss. Now he wants me to go to a dermatologist and see if they can figure it out.
I'm like you, thinking of getting my hair cut shorter just to take some of the weight off, in case that's adding to it falling out. My husband also prefers my hair long, but he'll get over it! LOL!
I'm looking forward to the holidays too! But I'm not looking forward to dragging out all the decorations. :( It just makes me feel tired thinking about it. Enjoy those grand babies, and I wish you luck and good health!!
If I can help you, let me know. :)
 
Ya know, after doing a lot of research, I think I just might have to accept it's just another horrible part of Crohns for some of us. I've been off all meds for 6 weeks now and it's still coming out. I'm taking vitamins just in case, and using special hair care, but I figure whenever this is done, it will be done. I absolutely hate it though and the Docs just don't understand how truly devastating it is, especially for women. We put up with a lot with this disease, but this one stabs at our self esteem, and worth even though we know better as strong women. It just SUCKS.......
 
I agree. I believe it's just one more horrible symptom of this horrible disease. I don't understand why these researchers can't figure out more about the disease, and all its symptoms. I mean, I give them a lot of credit because I know there's a lot of research being done, and a lot of progress has been made just in the 15 years that I've had Crohn's. But we're in the 21st century, shouldn't we know more about all these awful diseases by now?
I'm not even sure if I'm gonna waste my time and money at a dermatologist's office. If it's not the Crohn's causing the hair loss, then it's stress, which is caused by the Crohn's. It's a viscous cycle! I've talked to other people with Crohn's who have the same problem with the hair loss, so I think the two go hand in hand.
I'm trying to really baby my hair right now. Being careful about washing and brushing it. I don't pull on it any more than I have to. And yes, as a woman, it's a lot scarier. My hair is naturally thick, so no one can tell just by looking at it that it's falling out, but I can tell. Especially when it's wet.
People who don't have Crohn's don't understand just how nasty this disease is. That's why I'm glad that I've found this forum. We can share experiences and war stories! lol!
Crohn's does suck! BIG TIME! I wouldn't wish it on anyone!
 
Hi all, I'm new to the forum & was looking to see if anyone had any successful treatments for thinning hair. I've had Crohn's disease since 98 & also had UC. I had an ileostomy in 2008, I have no colon, no rectum & a portion of my small intestine is gone. To say that absorption is an issue for me is an understatement! I've been on ALL the meds for Crohn's, with little or no success. I respond to surgery, hence the ileostomy. I never experienced hair loss until 2 years ago, several years after my last surgery. I'm also a breast & uterine cancer survivor, both of which I had in 2011, plus that same year I had a revision to my ileostomy. I believe that my hair loss is from absorption issues, as well as the stress that the various health issues have put on my system. Since I'd been on all the meds & combinations thereof for Crohn's, hair loss was never an issue for me. I think it's perhaps a combo of meds for some of you, and also, Crohn's is a very personalized disease in some regards. What one experiences, another does not, what meds work for one, doesn't work for the other. That's my two cents, hope it helps!
 
I showed a beautician the breakage in my hair today when my husband was getting a haircut. She recommended using products that contain keratin.
 
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