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06-12-2012, 01:00 AM   #1
Blackbutterfly
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Hair loss....HELP!!!

Hello,
I was dx with UC in Feb/12. I am off of the prednisone but am still on pentasa, tecta, and azathioprene. I believe the aza has lead to extreme hair loss for me. I am a female with long, thick, curly hair, and it has been falling out in extreme amounts. I am freaking out a bit but will be discussing it with my GP in a week or so. Please help if you have any suggestions/stories/advice.

Wishing I had my old head of hair!
06-12-2012, 01:20 AM   #2
deb123
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Yep, had the same thiing when i was on azathioprine. I have thick black hair, but when i woud wash my hair in the shower, the plug hole would block, cos it would be full of hair. All my GI doc said at the time was he couldnt notice, as i had more than most anyway - charming!
Maybe get your vitamin levels checked as well, as that wont help if you are deficient.

Best wishes,

Deb.
06-12-2012, 03:23 AM   #3
Aura
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I get the same as Deb - I lose lots in hairbrushing and in the shower. But always get told I have enough hair on my head for 5 people.

Search the forums here for hairloss as there are some threads there with some great advice for - washing hair less, types of shampoo, not blow drying or straighting hair etc

I too have thick dark brown curly hair.
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DX 1998
Meds: 2.5mg Plendil ER. Azathioprine 100mg; Inhibace+ 12.5mg; gastrosoothe 60mg; Simvastatin 40mg; Loratadine 20mg; Fluoxetine 40mg; Provera 10mg; Metformin 2.55g; Cal d forte; 1.25mg, Humira; Panadol 4g; Pred 3mg
06-12-2012, 04:58 AM   #4
beka
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I've started losing my hair as well. Clumps fall out anytime i touch it but especially in the shoemwer and when brimushing. To minimize it I only wash it every other day if possible, and use my fingers to comb it before braiding and pinning back. No tight ponytail holders! It seems to be helping a bit.
06-12-2012, 08:36 AM   #5
LOSTnut
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I used a high concentration of Biotin, on the advice of my hair dresser, with great success. No more hair falling out, although I am no longer on aza either. I still use Biotin though but I have read here on the forum that it doesn't work for everybody.
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06-12-2012, 08:46 AM   #6
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The same thing happened to me on Pentasa when I was first diagnosed. It grew back when I stopped taking it, for the most part. Still a little thinner than it was.
06-12-2012, 09:33 AM   #7
nikimazur
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I first noticed severe hairloss when I was on pentasa the first time around. Luckily my hair grew back after two months, but in the third month, I restarted asacol hd, and the hair loss has continued. My hair is soo incredibly thin, and had grown only a half inch in the past year. I went from having gorgeous thick Italian hair that needed to be cut every six weeks to not needing a hair cut in over a year.

My hair has also become dry/ gross and I have also developed dandruff which I never had before. Currently I'm using just basic head and shoulders, and have tried biotin, different hair/ nail supplements but nothing has helped. Between the meds and being malnourished I feel so stuck, ugh.
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Original Dx: April 2011


Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)


Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira




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06-12-2012, 10:36 AM   #8
ThatsWhatSheSaid
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Samesies!!! Well, bad samesies....but samesies all the same. Dark brown thick curly hair. Went through a big bout of hair loss with a flare in the fall. I have been taking biotin and I also take Vit E. I have also been using a hair thinning product...Not FDA approved so not minodoxil or whatever. But it is oriented toward hair loss from stress/illness/medicine/pregnancy. I think it works. I am leaps and bounds from where I was for a while there. I don't have the stuff with me so I can't give a name now. Remind me later if you would like it!
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06-12-2012, 10:50 AM   #9
Blackbutterfly
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Thanks to all of you who responded. I really appreciate it! It seems strange, but I handled the Dx of UC wayyyyy better than I am handling the hair loss. Very down lately

"Thats what she said" (hilarious name btw), I would love ANY options, products, advice. It is so hard when your normal hair turns heads because it is the first thing that people see when they see you, like marg Simpson. Lol. It is my livelihood. Ahhhh!!!

I think before I see my dr. I will try washing and brushing my hair sparingly, and I won't straighten it.

It is embarrassing going to work like this, we are not allowed to wear hats. I have considered extensions but you would see the clips because my stupid scalp is showing. Grr.

Girls with curly hair will understand this, I used to complain about the big unruly curls, but now, I would give anything to get them back. Lol.
Irony is... A Female Dog! Haha.
06-12-2012, 11:28 AM   #10
TammyKathleen
 
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Hello,

This is what happened to me after I had weaned myself off of Prednisone and also was taking Asacol. I was also in a never-ending flare, so I don't think that helped.

Many medications can make your hair thin out and diminish. My mother is on medication for other medical reasons and hers started a few years after mine.

I strongly suggest using the shampoo/condition Nioxin. You can generally buy this in a store that is for hair dressers, such as Sally's Beauty. It dramatically cut down on my hair loss and it is now reversing my mom's. I recommend cutting down hair washing to as infrequent as possible. I know that really can only go so far if you have to be out in public, so I do not mean that callously. I was in the middle of my last year of law school and I was mortified. My hair dresser also gave me a cut (I had long blond hair) that was short, but also that hid my hair loss as much as possible. The shorter length released some of the weight of my long hair, which did help.

I also know that Selenium is an important mineral for hair loss. So is Zinc.

It is a very discouraging thing to have to go through. Not fair. But, I will say that after that one semester, the hair loss did stop and I started to regrow and now am back to having my regular hair.

Best wishes,
~Tammy
06-12-2012, 12:00 PM   #11
Blackbutterfly
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Thank you so much Tammy! I will look into those shampoo and conditioner options.
The reason that I don't want to cut my hair is that it took years to grow, and I don't want to have a balding Afro. Lol. But it may end up coming down to a shorter style.
I am recently off prednisone so that might be it??
06-12-2012, 12:10 PM   #12
Blackbutterfly
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I am 30 yrs old and this is my first time on any kind of medication. My question is this: if I must remain on Pentasa and Azathioprine, combined, will the hair loss continue? What about a lower dose of Aza?
06-12-2012, 12:17 PM   #13
kiny
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Can't tell you what is causing it, but people tend to blame their meds pretty fast without looking at other things. Iron deficiency and vitamin deficiency is very common for crohn, and both result in hair loss too, genetics does too, it's not always the medicine, hair loss from pentasa is extremely, extremely rare, just saying you know. Many people go through periods with some hair loss in their lives without being on meds at all, both women and men, unless it's extreme hair loss it often is simply genetics. Maybe decide if it even the meds that cause it you know, just notice that people are so fast to blame things without knowing if it is that.
06-12-2012, 12:31 PM   #14
ThatsWhatSheSaid
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I would agree with Kiny. I went on Pentasa at 18 when diagnosed. I never had issues with hair loss until last fall. I am 25 now (and last fall) when I went into such a tizz of a flare and ended up losing hair. I blame my hair loss on the illness. Being sick is extraordinarily hard on your body, not to mention the deficencies that are practically hallmarks of crohns. I take it if you were on Prednisone, you too were having a flare. I actually just re-started pred yesterday (thank God). Anyway, I don't know much about Aza. But I blame my hair loss on the hardship the flare had on my body. I've also (as noted before) am supplementing with biotin and E and selenium because I know it helps with hair loss and those three work together well (don't remember how off the top of my head but I researched it extensively prior to taking them). I will definitely get back to you about the stuff I use!!
06-12-2012, 12:31 PM   #15
CLynn
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I am 30 yrs old and this is my first time on any kind of medication. My question is this: if I must remain on Pentasa and Azathioprine, combined, will the hair loss continue? What about a lower dose of Aza?
On Aza myself, Black. I do notice more hair in the brush, and more when I finger comb conditioner thru my hair after shampooing. But I only wash every other day, have done this way for years, was lucky enough to never have oily hair. We tend to be deficient or low in so many vitamins and minerals, even when not flaring, as our ravaged Crohn's places just CAN'T absorb as they should. I recommend a great multi vitamin, and fish oil capsules, and maybe even some b-complex. Funny that someone mentioned selenium, read a book 15 years ago called "Eating Right For a Bad Gut" and in one portion of the book the author mentions what vitamins and minerals Crohn's patients should take, to help our bodies and stave off flares in some cases. Selenium is one he mentions.
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Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
06-12-2012, 12:33 PM   #16
Carolyn C
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I am on Remicade and Aza. This past fall I had a very bad flare. I was in the hospital for 6 weeks and was on TPN. When I was released from the hospital I started losing my hair by the handfuls. So much that my scalp had started to show through. I thought it was due to the medication but my doctor told me that it was probably due to the fact that I had been so sick and that as I got feeling better my hair would probably start to grow back. He said his son was hospitalized for an illness (not IBD) and he had started to lose his hair too. He had seen a dermatologist and had been told that people who are sick tend to lose their hair until they get better. He was right because the last couple of months my hair has slowly started to grow back as I have slowly gotten healthier. It is not as thick as it was but I am hoping overtime it will be again like it was.
06-12-2012, 05:36 PM   #17
Blackbutterfly
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Thank you for all of your responses.
I would have thought that the illness was the reason for the hair loss, but I have been out of the hospital for 3.5 months, and the hair loss is just starting now??? I guess every case is different. I feel healthy, I'm back to work, my weight/diet are back to normal... I guess time will tell if I get it back in full thickness.... How about now? Lol
06-12-2012, 07:13 PM   #18
ThatsWhatSheSaid
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Oh actually, that's normal. I think it usually takes 3-6 months for the hair to begin to fall out after the stressor because of the different growth phases (so more hair goes into resting rather than growing and then falls out a period later). Something like that. TelogeN Effluvium. So what youre describing sounds normal and like it will grow back. YAY!!

Funny how much hair effects self-esteem and femininity.
06-13-2012, 12:22 AM   #19
Blackbutterfly
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It absolutely does!!!

My sis in law had breast cancer and lost all of her hair during chemo, so I feel lucky in a way that I don't have to completely shave it off. She is a great source of support right now. Her and I were both diagnosed with our diseases at the age of 30.

Thanks for the kind & supportive words, that's what she said, I guess it is normal and I'll just have to wait it out and see if it grows back soon. Are you a fan of "the Office"?
06-13-2012, 09:59 AM   #20
ThatsWhatSheSaid
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Haha! Absolutely! Although I haven't watched as much with the recent cast change. I'm a big fan of comedy. The stuff that I use is Phyto Phytocyane Revitalizing serum.

From Sephora's website (which is where I get it, you get free shipping and free samples!):
What it is:A rejuvenating complex designed to counter temporary hair thinning caused by stress, fatigue, pregnancy, medication, or seasonal changes.
What it does:This advanced formula stimulates microcirculation in the scalp to create a healthy conditions for new hair growth. Doses of essential nourishment—sulphured amino acids, vitamins, and proteins—encourage keratin production to restructure, thicken, and fortify hair. Hair is left instantly fuller and more lustrous.


So, basically if you are losing hair that is not going to grow back, it won't do anything. But if the hair loss is temporary due to a stressor like illness, it helps the hair grow back faster, better and stronger. Someone else mentioned Nioxin. I also use a product from that line (not the shampoo or conditioner, I think it is a serum of sorts). Most of my thinning is gone although I have a couple of places where I feel like my part is more defined than it needs to be and the hair line isn't quick as thick and dark. But, I've been pretty sick for quite a while and truthfully did see dramatic improvement using this stuff and supplements.

I am engaged and will be eloping or doing a destination wedding within the next year. So I use this stuff all the time. I have two back-up boxes on hand because I want my pictures to be beautiful...not lacking, you know?
06-14-2012, 12:48 AM   #21
Blackbutterfly
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Wow, thank you so much for the product info. You're awesome. I'm
So excited for you, engaged!!! I have been married for almost 3 yrs and loving every minute of it. If you marry your best friend, your marriage will be rad!

Thank you for brightening my gloomy hair loss week with a fantastic prospect. I will def be getting some of that sephora stuff.

Are you from the US?
06-14-2012, 12:49 AM   #22
Blackbutterfly
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Ps. I am a huge fan of all things comedic as well.
06-14-2012, 05:29 AM   #23
Holly
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I am taking Pentasa and am loosing hair in massive clumps aswell.
I have a lot of hair so I don't think there is any chance of me going bald but it is worrying I am waiting for a Consultation with the Gastro to see if I can change meds. Don't know if I can though, mines for CD.
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-----------------------------------
Crohn's Disease

...of the Terminal Ileum/Rectum
Ileostomy
...5/11/2014
Diagnosed w/Crohns
...24/4/2012
Medication
Pentasa 4x1g
Azathioprine 125mg
Due to Start Humira

Facebook: Holly Shorter Twitter: HollySho
Instagram: @hollysho


06-14-2012, 07:37 AM   #24
Sailorluna
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I lost quite a bit if hair and had other strange effects. The hair on my legs and armpits stopped growing and I ended up with about an inch of my hair coming in blonde before going back to dark brown.

It was from a combination of severe protein malnutrition and the resection surgery.

I used Nioxin, and that really seemed to help.
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
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06-14-2012, 08:04 AM   #25
ThatsWhatSheSaid
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Blackbutterfly, I am from the US- Wisconsin. So right below Canada bordered by Lake Superior and Lake Michigan. Thanks!!! I know, I am really excited to marry him. We have been dating for over 11 years and are extremely fortunate to have found each other so early in life. He is my best friend which helps immensely when dealing with this stuff.

I hope one of those things work for you. I did all because I was like, may as well throw my hat in every ring. I actually went to the dermatologist as well and she inspected my scalp (after having done supplements and serums for 2-3 months). She also tested some hormone levels for me. She said the scalp looked really healthy and there was a lot of new hair growth. She explained a lot to me about why the stress of an illness causes the shedding and emphasized that it was important not to stress myself out further because of the hair loss. She said to just focus on my health and keep doing what I am doing and the hair will come back. It has. I was so thankful because she understood how upset I was.

Holly, I am also on Pentasa for crohns. Try to keep in mind that hair loss from Pentasa is pretty rare. I'm not saying you are not losing hair, just that the more likely cause is the crohns flare you have been dealing with. I see you were diagnosed in April and I don't know how long before that you were sick, but being sick is enough to make hair that would normally be in a 'growth' state go into a 'resting' phase. Hair only remains in resting phase for a couple of months and then falls out. Normally, most of the hair on our head is in the growth phase which is why despite always losing hair, there never really seems to be any missing. When portions that should be in a growth phase enter resting phase from being ill, that is what causes the dramatic loss, usually a few months after the stressor (because the stressor induces the resting phase).

Again, it is possible the medicine is causing the hair loss for you, just more likely that it is from being sick. I only say this because it is really important to treat the biggest problem (ie the crohns) to really get better and healthier as a whole (your hair and other issues). I know it's really difficult.
06-15-2012, 02:02 AM   #26
jane16
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There are many claimed remedies for female hair loss but which treatments are medically proven to work and which are not. Base on my Sister the best way treatment of hair loss specially in women is MINOXIDIL,It is proven to stabilise female genetic hair loss and stimulate renewed hair growth and is also highly successful in treating other forms of women’s hair loss.
06-15-2012, 10:10 AM   #27
Piranha
 
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Can't tell you what is causing it, but people tend to blame their meds pretty fast without looking at other things. Iron deficiency and vitamin deficiency is very common for crohn, and both result in hair loss too,
Agreed. I had a bad flare last year and after that, the resulting surgery etc ended up very anaemic and with very low blood protein too. I'm male, but the result was noticeable thinning of my hair everywhere, head and body! Also my fingernails and toenails became very slow growing, brittle and thin. In fact I still have a visible line across my toenails which has just about grown out now where you can see they were starved of nutrients.

Whether the aza has something to do with the hair loss is hard to say but I'm sure the malnutrition is just as likely to be to blame. Not much hair has grown back so far but it doesn't seem to be getting any worse.

Oh well... I guess the smooth look is 'in' right now
06-15-2012, 10:55 AM   #28
Judith
 
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Hello,
I was dx with UC in Feb/12. I am off of the prednisone but am still on pentasa, tecta, and azathioprene. I believe the aza has lead to extreme hair loss for me. I am a female with long, thick, curly hair, and it has been falling out in extreme amounts. I am freaking out a bit but will be discussing it with my GP in a week or so. Please help if you have any suggestions/stories/advice.

Wishing I had my old head of hair!
Is your hair in good condition? Or is it dry, split ends and very brittle (breaks easily)? Long curly hair can be very dry anyway but I am curious if you are finding it more dry and brittle than usual. Do you notice your scalp is itchy? What shampoo and conditioner are you currently using?
Thanks for info,
J
06-16-2012, 10:54 AM   #29
Blackbutterfly
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That's what she said: thanks again for the tips, I have ordered the stuff from Sephora. I will let you know about my progress. Thanks again!

Jane16: I will also try the Minoxidil. Is your sis a hair stylist? Thank you for the suggestion, I will def look into it. Do you think that I can get it in Canada?

Piranha: my nails, for some reason, are way healthier than normal right now, as far as strength and length. Weird hey? I hope that you are feeling okay.
I was absolutely malnutritioned throughout my stay in the hospital, they had me on a potassium drip for weeks because I hadn't eaten in weeks prior, or been able to keep water down in at least 6 (dangerously dehydrating) days. I have been out of the hospital and in remission for 3.5 months now and am eating normally. The only exception is that I used to eat salad everyday for lunch but cannot anymore. They gave me pains before I fell ill and the docs say to stay away from the raw veggies. I have minimal spice as well. I do drink a wee bit of caffeine, I shot of espresso every couple of days in an ice coffee when I'm working, and I have cut alcohol out too, but will have an ounce of white wine with dinner once a month or so. The rapid diet change was hard at first but then I just figured out what bothered me and what didn't in order to keep my nutrition in line. I have a lot of fruity 'ensure' shakes with loads of protein and vitamins, but I am still a little cautious about dietary vitamins and supplements as they were what seemed to trigger my flare.

Judith: I usually have long, nice, curls. My normal product was always the Marc Anthony Line if curl products. All the way from shampoo/conditioner to the Moroccan oils/curl creams/mousse/and finishing spray. Since 1/2 of it fell out... I have noticed that it is now very dry/brittle/split ends/thin/short/and my scalp is very dry/itchy/inflamed/exposed - as in, I can see a lot of it due to the thinning. Its pretty brutal but I am taking lovely Forum advice and trying not to stress about it, it's just a part of life when you're sick I guess? I will be trying to get some hair extensions that clip in and out in a curly version and a straight one so I have options. My hair dresser has been amazing. She is getting me cost pricing on all of the products I need.
How is your hair? Do you have the same symptoms?

Thanks for your support everyone! This forum has really made me feel normal and I know that I am not alone. It is so hard to explain what you're going through to people who haven't experienced sickness. Thanks again for going through this with me.
Xo
06-16-2012, 02:11 PM   #30
Hobbes650
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Same story for me too, sadly. I lost about 90% of my hair. Kept growing back in and then falling back out again. My hairstylist even noticed it felt funny after it grew back. Once I had surgery and off the meds it all came back just fine.

Thanks for sharing the stories. Back in 1986-87 when this happened to me my doctor had never seen this happen before. I was even sent to a hair doctor who diagnosed with me alopecia ariata, or something like that. Looks like I was not alone though.

To cope, I wore hats all the time. My parents spent money on a hair piece but I never wore it. The hair loss was certainly the last straw for me, given all the other symptoms and side effects of medication. All of my problems were still present one year after diagnosis and since I couldn't come down any further from prednisone, we then started to think about surgery as an option.

Hobbes
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Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
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