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05-08-2011, 07:10 AM   #31
LucyNZ
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Join Date: Mar 2011
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!!
07-12-2011, 04:12 AM   #32
Sharna.S
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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
07-12-2011, 12:26 PM   #33
Graf
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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.
07-12-2011, 01:50 PM   #34
Gutsy
 
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Location: Balfour, British Columbia
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.
07-12-2011, 03:56 PM   #35
steph38
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Join Date: Jul 2011
Tina, I had the same issue not sure if it was from the Imuran or the other meds I am on, but you should not go bald.
07-15-2011, 09:45 PM   #36
Kelly R
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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.
10-16-2011, 06:20 PM   #37
gabpurple97
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Join Date: Oct 2011
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.
11-09-2011, 02:34 AM   #38
gabpurple97
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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).
11-09-2011, 08:42 AM   #39
Sunshine Cat
 
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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!!!
11-11-2011, 09:13 AM   #40
JMelia
 
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Location: Omaha, Nebraska
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.
03-15-2012, 04:41 AM   #41
homeremedies4hairfall
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The common reason for hair fall is lack of vitamins. so its better to include vitamin rich food in your diet avoid using harsh and chemical based hair products as it causes damaged to hair.

Home-Remedies-For-Hair-Fall
10-21-2013, 03:48 AM   #42
Bamafan94
 
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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
10-23-2013, 05:57 PM   #43
Traumanurse
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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?
10-30-2013, 11:50 PM   #44
Bamafan94
 
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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!!
10-31-2013, 11:22 PM   #45
JMelia
 
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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!
11-04-2013, 11:09 PM   #46
Bamafan94
 
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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.
11-05-2013, 12:28 AM   #47
Traumanurse
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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.......
11-05-2013, 12:50 AM   #48
Jessie's mom
 
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My daughters hair also falls out and doesn't grow she is on asacol and now remicade
11-12-2013, 04:59 PM   #49
Bamafan94
 
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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!
11-08-2014, 08:13 PM   #50
beccarebecca
 
Join Date: Nov 2014
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!
11-08-2014, 10:57 PM   #51
fozheart
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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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