Hair loss

Crohn's Disease Forum

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ruthyp

Joined
Mar 15, 2011
Messages
104
Hi All,

Over the past 4-6months I have noticed that my hair is falling out all over the place, my hair is so thin now that im going to invest in some hair extensions (which arent cheap).

I know this is incredibly vain, and prob the least of my problems, but as a single 22yr old female, my hair is very important to me.

Has anyone else had a problem with thinning hair?

my list of meds are on my signature.
thanks
xxx
 
It's the asacol same thing is happening to me. I have bald patches all over and it keeps coming out in clumps when I wash or comb it.
 
Really? Asacol? I was told that it's a symptom of the Crohn's itself. That it's something that happens during a flare.. my hair is falling out as well, but not in clumps..... it like a strand by strand type of thing. I can't decide what to do about it... haircut? Wig? Scarf? Hat?
Asacol is a maintenance drug right?
 
Which type of Asacol or both of them? I leraned that there are 2 different ones. My hair has gotten thinner but I thought that it started when I was on Aza which I stopped because of that.
 
I had a lot of hair loss on Asacol. It seemed like I was leaving a trail of hair everywhere I went. Once I stopped the Asacol, it went away.

I'm now on Imuran (Aza) among other things and haven't experienced any hair loss, although I know a lot of others have.
 
I am having the same issue. My hair clogs up the drain in the shower while im still in it. I am on asacol,predisone and entocort. My docotor said i was from the crohns but i never had my hair fall out till i started taking all these medications.
 
I have a lot of hair loss but im not on the same meds as you, my GI said to see a derm doc so I have an appt in June to see if theres something they can do.
 
Idk whether its due to crohns or not. I know the asacol made mine come out. I've been off it n it still happens. I had to get a haircut to help cover the places other times I wear a hat or something.
 
i think this is something i really need to talk to my doc about, im so upset about it, every time i look in the mirror i cry about it :(
xx
 
ruthyp said:
i think this is something i really need to talk to my doc about, im so upset about it, every time i look in the mirror i cry about it :(
xx
Click to expand...

I know how you feel. I started getting acne recently on top of my hair thining and now i have moon face. I haven't left the house in a week. I feel so ugly i just can't bare to go outside. I hope it will all go away once im off the meds. On top of that i have to travel to see family in two weeks and some of my family hasn't seen me since i was 14 (25 now) and now i look like this it is really upsetting. Ive been thinking about postponing my trip. I wish leaving the house with a bag on your head wouldn't draw attention.
 
Wow, I didn't know it could be a Crohn's thing. My hair has been clogging up the drain like crazy. I started noticing it about 3 months before I was diagnosed. I'm not on asacol though. It seems to be better now that I'm out of a flare. Mystery semi-solved!
 
my hair fell out in clumps about 2-3 months after i had surgery for my crohn's. the hair loss was due to a process called telogen effluvium and can be caused by anything that stresses your body, such as surgery (but it can also be caused by chronic illness or drugs). for me it eventually stopped after i had lost maybe 40% of my hair, and it all grew back eventually. i can certainly relate to how you're feeling...i was horrified and i don't think it's wrong or vain to be upset! definitely talk to your doc to make sure nothing else is wrong (like a vitamin deficiency) and :hang:

-cally
 
Yes, it is vain - but 99.99% of people are vain to some extent, so don't feel bad about that. I'm sorry you are going through this. As a fellow female, I can imagine it is traumatic to lose your hair. Definitely speak to your doctor about it.
 
My hair fell out by the handful after surgery. I was led to believe it was the pred. As soon as i had tapered off it grew back with a vengeance. I actually have it thinned out at the hairdressers now. I know how alarming it can be tho, but don't worry as it's often temporary. Not sure about extensions tho. They are notorious for dragging your hair out at the roots. I understand that at your age (my daughter is 24) it can be quite devastating. Definitely mention it to your doc AND hairdresser. Hope it doesn't last too long for you luv. I'm sure you are gorgeous in every other way :) Hugs x
 
Thanks everyone, its so nice that when im having a hard day i can come on here and read all your supportive messages! I have been on steroids for 9 months now so it could well be them like you suggested. THANKS TO ALL OF YOU!! :D
xxx
 
Hi Ruthy, I am new to the forum but wanted to pop in and tell you to hang in there with the hair falling out thing.

I am recently diagnosed with CD but I was told I had colitis and ileitis 17 years ago (pretty much probably had CD then just a really bad Dr who did not further investigate or send me to a Dr who would). The first thing I noticed after my 2nd daughter was born 13 years ago, was my hair was falling out and thinning at rapid rates. It has been thin ever since. I went to the Dr about it and he checked me for all kinds of stuff but could not figure out what was causing it. He thought is was possibly due to my diabetes (which, btw, will also cause thinning hair). But here is the thing, I was only diagnosed with diabetes 5 years ago and the thinning hair has going for 13 years now. I was told recently, since my diagnosis, that thinning hair is a symptom of CD. I am on asacol now, so I hope like crazy, my hair does not thin anymore than it is now cause it is soooo very thin as it is (since is seems that most people who take asacol see their hair fall out and get thin).

Hang in there, and I understand what you are going through. Hugs to you!
 
My hair dresser told me the other day to use Biotin. I bought a bottle of pills today and hope she is right again.
 
Biotin works great for hair loss, but unfortunately, I was not so lucky. It did not make a difference in my hair. My nails and skins looked and felt great. I have seen it work for others though, so definitely use is and see how it works for you.
 
I feel your pain as I am going through the same thing. I used to have this gorgeous, thick long hair (not to brag, but that was the ONE thing I truly loved about my body) and since I've started Azathioprine about 5 months ago it is terribly thin and keeps falling out!!! I'm horrified and am so upset about it. Sometimes I cry about it and then I feel guilty for crying about it b/c I should be lucky that is the worst of the side effects. But I'm a 26 year old girl and it's just hard. My doctor said it's likely a side effect of the Crohn's disease and not the medicine, but I've had this disease for quite some time now and am just noticing the hair loss now. My shower drain is constantly clogged and I am shedding more than a dog!! I am also taking sulfasalizine and didn't think it could be attributed to that, b/c I had only heard of the hair loss side effect from Aza but I'll ask my doctor if I can come down a notch on the sulfa and see what happens. I started taking Biotin but haven't noticed a change yet, though I've only been on it about 2 weeks. I've also heard silica is good for hair but I was told to wait until three months on the Biotin before trying that. Will the hair loss taper off at some point or just continue to fall out?? I'm so nervous I'm gonna wake up one morning and be bald! Any other advice??? Please help!
 
Hi

When I quit taking the sulfasalazine my hair was much better! The dr put me on Apriso and my hair didn't have any problems with it. Such a relief!
 
I've also deal with strange hair problems on different meds over the years.

On Imuran and 6MP my hair thinned, but also went curly and hasn't gone back to the stick straight I used to have. Not at all complaining!

Prednisone made my nails grow like crazy, as did my hair. The problem was that ALL my hair grew like crazy! I about went broke on waxing my brows and 'stache as well as the razors taking care of my legs and pits.

But the worst was this past winter. Before I went on Humira I had a TB test. It came back positive - again! Last time this happened I saw a CDC doc and there was no issue. But this time I had to go through a whole round of meds - Isoniazid and Pyradoxine. I think it was the Isoniazide that made my hair fall out in clumps. I didn't realize how bad it was until a couple weeks ago when I found a very short chunk of hair in the front along the hairline, right at the part. It's about an inch and half long. Last night I found another piece about that long at my crown. I commented on the short pieces last night to my SO and he said that my hairline had been receding at my part, but didn't want to tell me at the time as I was so freaked out by all the hair I was finding in the shower.

Sweet wonderful man who knows not to tell me my hair was receding, even though I wasn't on Prednisone and psychotic at the time.
 
So far, I already noticed that my nails stopped splitting and the hair loss has gone down. It hasn't stopped completely but the styling has become easier and I think whatever comes out now, comes out when I comb my hair after washing it instead of when I wash my hair. Personally, I would call it a success on my end. I also feel that my hair has become stronger again and it not as limp.

Yay!!! :ysmile:
 
I remember I used to have hair loss as well, and the doctor did a test and found I was really low in Zinc. You may be deficient in several minerals like zinc, magnesium, etc. I take a seperate zinc supplement and I get some more zinc and magnesium in my calcium supplement. May want to ask your doctor to have your mineral levels tested.
 
Re Hair Loss

Hey

Ya I had this issue when I was on prednisone and on Imuran...I don't have this issue now although there is still an increase in hair loss compared to prior to my diagnosis, but Wayyyy better now than when I was on all those drugs.

I am going back on 6 merc here soon tho and I found it does the same thing as Imuran with falling out hair but not quite as bad.

I hope you are feeling ok, I know it's scary as hell when you first start getting those large clumps of hair falling out...

Thinking of ya..

-jamie
 
thanks everyone for your support. Its still really bad, I have even noticed a slightly bald part on the back of my head, luckily its fairly low down so i can cover it by putting my hair up. I just feel like crying all the time, my hair used to be my best feature and one of my friends (who is known for her blunt honesty) said my hair looked very limp. its horrible as i know she said what everyone else is thinking! I may try Biotin, its worth a shot. I got told all my levels are fine as far as zinc, magnesium, calcium are concerned.

Im so depressed, the pain i can cover up and put on a brave face but this is something i cant hide :( x
 
Just remember - hair grows back! You still have the genes for nice hair! Its still there in your DNA, just lurking..waiting! All the more motivation to get better :]
 
Hiya Ruthy

I have stages of hair loss, I believe it's a Crohnie thang!
I'm only on Pentasa so not sure if it's that, but my hair loss started yonks before Pentasa!

Here is a lovely man, Paul Norris, read his inspirational blog (he's a Brit)

http://www.hold-on-to-your-hair.com/

You'll be ok, I promise, it's a temp thing, it's a Crohnie thing, it's a pain in the crack, but it'll be ok.
xxx
 
hair loss

xoxava said:
How long until you should notice a difference on biotin?
Click to expand...

Last September I lost half of my hair.,which followed an anaphylactic reaction to flagyl and ciprofloxacin.It was most depressing and I was afraid of losing it all.
I read about biotin on the web and chose to take one capsule , 1000microgram
each day.The web page recommended 5000mcg daily but I did not want to go that far, although it is water soluble so the body pees out excess.
It took a month for the hairdresser to see any new growth and it was too small to see.
By Christmas, three months later, there was a noticeable regrowth and now I have a very thick head of hair again.
Also it is now naturally curly-- before I have had dead straight hair all my life.
I also shampoo with Jason biotin shampoo.
It is very shocking to lose one"s hair and it depressed me greatly.
I am glad the hair grew back and strongly.
trysha
 
Biotin really worked for me, but it took a couple months for me to notice the new hair growth. You can also use a Biotin shampoo to help. I don't know if the shampoo worked or not but it certainly didn't hurt. I still take the Biotin everyday even though the hair loss stopped long ago. I buy it at GNC because it's only one pill a day compared to others that require multiple pills a day. As most Chronies do, I already take enough pills everyday.
 
bald

im bald now because of this disease. dont worry, wigs are affordable and people dont notice if you get one that is custom fit. good luck with your disease.

ruthyp said:
Hi All,

Over the past 4-6months I have noticed that my hair is falling out all over the place, my hair is so thin now that im going to invest in some hair extensions (which arent cheap).

I know this is incredibly vain, and prob the least of my problems, but as a single 22yr old female, my hair is very important to me.

Has anyone else had a problem with thinning hair?

my list of meds are on my signature.
thanks
xxx
Click to expand...
 
It could be the disease it self causing you that sort of problem, but in some cases it could be the medication you're taking.

I've lost lota of my hair when i swichted to ASACOL but it stoped eventually when i added some supplements to my daily meals (which extermly recommended for CD conditions)

Its hard to find out the reason, and thats why you should see a dector to run some checks and figer our what is missing,

the earlier you do the med-checks the more you'd reduce the loss.


:) keep the spirit high sweet heart.
 

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