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Posted 9/6/2011 10:02 AM (GMT -8)
Hi all,

I am a 41-year-old female who was first diagnosed with UC at age 20. Since then I have had a very mild case and I spent many years totally off all medications.

I had a very bad flare this past March and tried several medications (including hydrocortisone enemas that gave me edema and night sweats) until I finally went on a course of prednisone (highest dose was 30 mg), Asacol, and Rowasa enemas. I have been taking Asacol (4 pills three times a day) since the end of June, and I tapered off the prednisone in mid-August. I had a very good colonoscopy on August 3 (no sign of active disease except microscopically in two areas). I am in a fairly decent remission (one or two trips to the bathroom each day, loose but formed stool, no blood or mucus).

For the past two weeks I have been shedding hair like crazy. Before this started happening I had incredibly thick hair and I would say I've lost a good third by now. My scalp also itches badly on and off.

Could this be a reaction to the Asacol, even though I've been on it for a while? I'm wondering if being on the prednisone at the same time was suppressing it or something.

Is there any hope of my hair ever returning to normal?

I appreciate any advice or thoughts from people who may have been there, done that.
Posted 9/6/2011 11:58 AM (GMT -8)
Hello Fadoozle,
Asacol like several of the 5ASA's have a 3% or less excessive hair loss rate. I started loosing major amounts of hair after I was diagnosed and started Lialda. BUT, I am starting to think that it is from the major flare and lack of nutrition that caused my hair loss not so much the medication. I am still on the same dose and I am not losing my hair much at all now. My hair was also long and I ended up cutting it all off above the shoulders to keep from looking so thin and stringy... after the shock I actually love it short. I also take biotin and folic acid and a prenatal vitamin for double everything. I have alot of new growth in 3 months. Those supplements will help it to grow but won't stop it from falling out.
Sorry I couldn't give you better news! But keep your chin up and it will get better... Also, DON'T STRESS over the hair loss, that will make it fall out more :)
Posted 9/6/2011 12:12 PM (GMT -8)
Hi Fadoozle,

First of all look for any peach fuzz of new growth. If you have it that's a great sign that it will come back full.

I'm in the camp that being as sick as we get in a flare, malnutrition, plus pred withdrawal, causes hair loss months later after the onset of the major flare. For me, my hair came in thicker with pred, then after withdrawal it shed completely. Just because you are off pred doesn't mean the withdrawal symptoms stop.

It'll take a while to grow back, but it will. You'll probably be cutting down on your asacol but please don't go without meds this time. I made the mistake of being eager to cut back on Asacol, thinking it was causing my hair loss, but I reflared in a major way.

Asacol may be a factor, but I'm inclined to think it's mostly the other factors.

Also, the Rowasa enemas, though not necessary every night unless you are flaring, do help maintain remission in addition to Asacol.

After three years, I finally colored my hair as a present to me for having it now all grown back.
Posted 9/6/2011 12:50 PM (GMT -8)
Hi journey2health and LivingAgain,

Thank you so much for your quick replies and words of support. I am going to see if I can cut back slightly on the Asacol to see if that helps and will keep doing the dreaded enemas every other night or so. I wish I had known about what to look for in terms of pred taper side effects (e.g. joint pain and this hair loss if that's what it is) before I got both and started freaking out. When I spoke to my GI doctor's nurse this morning she said she never heard of prednisone causing hair loss and had to "look up" whether or not it was a side effect of Asacol (not comforting to say the least!).

journey2health, I had a similar experience--I had noticed while on the prednisone I wasn't even shedding hair the way I usually do and just chalked it up to being on the medication since I also had some facial hair growth. When the hair started coming out after I tapered off I thought it would just be for a week or so, like after I had my two children, but it's ongoing (not worse, just the same amount each day and still itchy sometimes) for about two or three weeks now and not showing any signs of stopping.

I am really struggling with anxiety around the possibility of this hair loss getting even worse or being permanent, so your advice and suggestions are really helpful. I have an appointment with my hairdresser on Thursday; hopefully getting a short bob will help me relax a bit. I will also try the supplements.

I keep telling myself that the real priority needs to be keeping the UC in check, not my vanity, though it's hard because every time I think about it I start crying. I will try to take deep breaths and stay positive!
Posted 9/6/2011 12:55 PM (GMT -8)
Two more questions--if there is no peach fuzz right now, is there still hope for full regrowth? Also, did your hair get really stringy and lifeless feeling? Is that just from lack of volume?

Ok, now I'm really going to try to remain calm. Really.
Posted 9/6/2011 2:08 PM (GMT -8)
Hun,
I had beautiful, long hair before all this started and my hair was MY LIFE!! When I got to my worst right as I was diagnosed that's when mine really started to fall out by the handfuls and every strand made me want to cry too... But the stress of worrying about what kept the strands in one more day made it alot worse and quick. Your body is already under a great amount of stress from the disease and then all the meds send you into stress overload. Plus the stress the disease puts on your life, work and personal and social... Then to top that, you stress over the hair that is falling out. Your body cannot take all that so you have to stop worrying about the small stuff and it was a hard lesson to learn but even those with long hair their whole lives can actually learn to love a short bob-style hair do. And no, if you are not seeing new growth yet don't worry... You need to start a good multi-vitamin if nothing else but adding in biotin and folic acid will help it to re-grow faster and healthy per my GI doctor. Alot of people also say that Nioxin has a pill form that seems to help according to my hair dresser. And yes, lifeless and dull(lacked color) and stringy was what mine had become too...
Hang in there!!! And embrace your getting better and hopefully into remission and look at a new hair do as you having some control over even a small part of this mess.
Oh, and I wouldn't drop my dose of your 5ASA unless your GI doctor recommends it, if you do it could make your flare worse and result in you having to up your pred dose again. Just my advise! Good Luck! :)
Posted 9/6/2011 11:13 PM (GMT -8)
Don't drop your dose of ASA just to see if your hair comes back. I was where you were. So upset. My GI told me that's a trade off. What? Lose my hair? That's terrible. So I dropped from 12 to 6 (GI said too, BTW) and bam, flared. Now I'm at 8 and I stay there.

Your hair will come back. Mine took between a year and a year and a half. Sickness causes hair loss. And it usually falls out three or more months after the onset of the shock to the system. Has something to do with follicles going dormant.
Posted 9/7/2011 6:53 AM (GMT -8)
Thanks for all the moral support. I am still a bit worried because in twenty years of having UC I never had an issue with hair loss. I have taken Asacol before but at a much lower dosage and time period (I was a bad girl and stopped my meds once I went into remission; now I know I cannot do this again). So I spend my days now wondering, is it the prednisone or is it the Asacol, or is it the flare itself?

Also, how long will I shed like this? I'm going on three weeks and no signs of it slowing down. Some hairs I lose are short, others long, others are some of my grays. I have a sad little ponytail that's not thick and fat like it has always been.

I have a call into my GI to see what they recommend and will try to remain calm.

Meanwhile I saw a streak of blood on my five-year-old's stool this morning and am trying not to freak out about that just yet, either. My feeling is that for now I just have to watch him and if it continues I'll need to get him seen.

We only get what we can handle, right?
Posted 9/7/2011 6:57 AM (GMT -8)
I forgot to mention that I also take Microgestin for birth control. I've heard that going off the pill can cause hair loss, too, but I have been taking it for about 18 months with no stopping except for the occasional missed pill.

What drives me crazy is trying to figure out what is causing this and trying to stop it, yet knowing that I cannot afford to go off my UC meds without paying for it.

Sigh.
Posted 9/7/2011 8:05 AM (GMT -8)
You need to start a good multi-vitamin if nothing else but adding in biotin and folic acid will help it to re-grow faster and healthy per my GI doctor.


Many on the Crohn's forum take extra folic acid and biotin to counteract hair loss.
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Posted 9/7/2011 9:02 AM (GMT -8)
The hairloss is a result of a long dormant period that the hair goes into, especially after meds such as prednisone and being in a long/severe flare, let alone the distress of being in one.

Now, keep it all in perspective, the process would have started at least 6 months ago.

Here's the hope part....the hair only falls out if another one is growing in...that's what pushes it out.

In a few months,you'll see the little sprouts.

It's really not the asacol, try not to get fixated on only ONE aspect that may seem an easy fix. You won't see new hair growth for a while...and considering hair only grows a half - one inch a month...that's a lot of waiting.

Wearing a ponytail can also contribute to follicle fatigue if you're pulling the hair too tight. Never put the hair in a ponytail or up when it's wet...when it dries, it shrinks, causing pulling on the scalp.
Plus, it causes breakage.

q
Posted 9/7/2011 10:12 AM (GMT -8)
Hun,
I would say don't worry about your son until you have more reason than one trace of blood in his stool... you are worrying yourself into a frenzy. For sure watch for any other signs but don't assume at this point he has this crappy disease... we will pray he doesn't!
And your hair will run its course and fall out until it stops... sorry for a vague answer but no one is the same and the amount of loss is or the time frame will be the same either. As soon as I started getting better and started retaining nutrients and got the extra vitamins in my system (a good month at least) I started to notice it wasn't falling out as much... and 3 months out now and it is not falling out except for normal shedding... and I have a ton of new sprouts, that are over an inch and a half long already... Hang in there and don't worry about things you can't control with this mess... Keep me posted on how things are going and I wish your son health and NO UC!!!
Posted 9/7/2011 12:32 PM (GMT -8)
Quincy and LivingAgain, thank you so much for your support. What a nice community of people this forum has.

When I think back to when my flare started in March, it's true that I was very, very ill. I had the major flare and a terrible sinus infection with a course of antibiotics that made my flare worse, a flare up of acid reflux, side effects from the hydrocort enemas, extreme fatigue...so maybe that's what did it.

My GI doc said I could go down to 3 Asacol/3 times a day and see how I do on that, then after two weeks taper down to 4/2 times a day.

You're right about my little guy, too. The cliche about only living in the moment is so true. I guess UC is teaching me that yet again. It doesn't really matter how long I've had the UC or how it's different...it is what it is today, and today, despite my hair looking like crap and my son's troubling BM, I was able to take him and my daughter to their swimming classes and enjoy watching how they're turning into confident swimmers who love the water. Not too shabby!

Thanks again to all. I'm glad I mustered the courage to finally post and seek out the help and support I don't often admit to myself that I really need. I will keep you posted!
Posted 9/7/2011 1:45 PM (GMT -8)
Fadoozle,
Although I don't have kids and don't understand your absolute panic over his BM.. I do completely understand the hair looking like crap!! I hated what my hair had become and everyday I looked at it in the mirror it made me really sad and I even would notice someone else's hair I would ask God why I couldn't have hair like that person.. Then I got it cut... I went 4 inches the first time, then a week later decided to go 8 more and then last week decided to cut it into a layered bob... and I colored it to make it look alive again.. I love it! It makes me feel better because it truly looks better.
Yes living in the moment is all we can do... and one bad day is not defining to all the days to come.
I love this forum, it was a Godsend to me when I was first diagnosed. Lots of support and great advice from great people that know exactly what your talking about and can sympathize, laugh or cry with you when you need it!
Posted 9/8/2011 7:19 PM (GMT -8)
Hi there,

I just wanted to let you know that I went to my hairdresser of almost twenty years today, tearily told him my whole story, got my hair chopped to a chin length bob, and feel 1,000 times better about how I look and how my hair feels. I know that the haircut doesn't solve the immediate problem, but getting it cut, and even just sharing the "secret" of UC that I usually keep from almost everyone I know and love, helped enormously.

Thanks for the idea of haircut as cheap therapy!

:-)
Posted 9/8/2011 10:46 PM (GMT -8)
Happy to hear you got it cut. How long was your hair anyway?

A chin length bob is a huge plus. Products will make it look fuller and thicker. As well, colour, especially a slightly darker colour will make it appear thicker/denser.

Shampoo products such as nioxin can help. I have a client who started using it when her hair was falling out (probably due to age and cholesterol med)...it definitely slowed the process and a nice plus is that her hair colour lasted longer.

Maybe you'll experiment with cuts and see yourself through a different perspective and not notice the loss as much as previous.

q
Posted 9/9/2011 5:26 AM (GMT -8)
I have recently been diagnosed with UC. I have been taking Rowasa enemas and Lialda 2.4g a day and had trouble with total watery D. Dr upped the doage to 4.8g a day and I noticed within a day or so my hair falling out.

It was very troubling and considering how 'down' I've been feeling knowing I have this new, crappy ailment, it did add quite a bit to the depression. When the watery diarrhea continued, doc took it back down to 2.4 a day and then added prednisone 40mg a day. I'm still losing hair, it may be a bit slower, but its still quite noticeable all over my shirt, floor and in the tub each day. I'm not sure if its the Lialda and Rowasa that caused the hair loss or if it was the lack of nutrition, as I had apparently been flaring since June. I've started really focusing on getting protein and all the other nutrients every day, even if its in pill form (vitamins, supplements, probiotics)

The diarrhea has really improved and I'm hoping to begin tapering the prednisone soon. I've been on a weight loss journey and had succeeded in losing 35# before this all began...I dont want the prednisone to take it all away. But, I'm fighting it tooth and nail!

Thanks for this wonderful community of information. Its been a great gift, as I've not even had my appt with my dr yet..just spoke with him about it immediately after the colonoscopy. I have, however talked with his nurse about 3 times a week since diagnosis. It seems all GI docs are too busy! I couldnt even get into see him for a month after being diagnosed with this! Seems crazy! How available is your doc when you have a flare? How important is it for me to get in when I have a flare?
Posted 9/9/2011 5:42 AM (GMT -8)
Hi CovelOne,

I'm so sorry to hear about your diagnosis. I've had UC for 20 years and I completely understand what you're going through. The hair loss thing is new for me and I am also not fully able to pinpoint the cause. If you're flaring badly, I think it's true that the priority is calming down your colon and taking the side effects as they come. For me the worst part of the disease is the dependency on pharmaceuticals, yet as I get older I recognize that as a mother of two children I need to keep myself as healthy as I can over the long haul.

In terms of availability of a GI, in my experience I am mostly in communication with her nurses and must schedule appointments pretty far in advance. During a flare most practices will try to get you in as soon as possible. If you feel like you're not getting enough attention from the practice overall, I would suggest finding another one. My GI doc's nurses get back to me the same day I call and usually check in with her before calling me back. I am now in the habit of making a weekly check in call so that I can adjust my medications as needed.

One more thing--I don't think that office visits with a GI are that crucial unless you need a rectal exam or bloodwork. A lot of this illness involves accurate reporting of what's going on and then figuring out the meds protocol from there, and this can often be done via phone. Of course if you are really ill you need to get seen, period.

Hang in there and know that you are not alone by any means!
Posted 9/9/2011 5:56 AM (GMT -8)
Fadoozle,
Glad to hear you got the new hair do!!! I know it was probably rough to watch the length go but man does it look and feel better when it is all said and done... I am super excited for you! And the more you talk about UC the better you get at accepting your life and its occasional limitations... I did learn that from all of this. Strangely there are a lot of people out there that have IBD and don't know whats going on with them... so it is a bit educational to listen to someone that has gone thru the unknown to diagnosis.... :)
@CovelOne, Sorry to welcome you to the forum... but welcome! The hair loss part of this sucks and I don't know if anyone can really pinpoint the true cause for sure...
And I don't care for the pharmaceuticals part of this either, but it makes me able to function and at 34 that is still important. I was very ill and had basically stopped going away from my house because of this mess. So, I am grateful for the "freedom" and feeling better.
My GI holds emergency appointments everyday... you call first thing and it is urgent, you can get in most all the time.. but for a regular appt, it is months out...
Posted 9/9/2011 1:49 PM (GMT -8)
CovelOne...welcome to the forum. Please put out a new introduction of yourself so that we can all welcome you and answer some of your questions.

about hairloss, normal to lose 100 a day or more. The longer the hair, the more it's noticed in the tub, shower, floor, brush, on clothing, bedding, etc.

your hair will NOT fall out in a day or two. The process of it falling out doesn't work that way, especially from a medication.

It's good you're doing better....you might notice more hairloss from being on the pred, however..

q
Posted 9/14/2011 6:11 AM (GMT -8)
Hi again all,

After a few days of feeling ok about my hair I'm down in the dumps again. I've tapered my Asacol to three pills/three times a day and am taking Rowasa enemas every other or every third night and symptomwise I'm fine. The hair is still falling out--not quite as much, and my scalp doesn't itch anymore, but it's so darn thinned out and lifeless. I still don't know if it was the prednisone, the flare itself, or the Asacol.

I bought a Hair, Skin and Nails supplement at Costco that has 5,000 mcg of Biotin. Do you think I need to get permission from my GP to take it or can I just go for it?

Also, is it worth it to see a dermatologist? I'm not all that interested in taking yet more medication, but I also don't want to go completely bald.

I'm trying to be grateful that the UC is under control but it's just so depressing.
Posted 9/14/2011 11:48 AM (GMT -8)
I'd never ask permission to take it. It's a B vitamin.

You need to realise the process for hair recovery will take many months to a year.

Yes, it's depressing....but micromanaging something such as this won't be helpful if you're distressing over it.

q
Posted 9/14/2011 1:46 PM (GMT -8)
Start the vitamins... and stop worrying. It will start to lessen the more nutrients your body starts processing... I agree with quincy, it is a process. It will still fall out for awhile until your body balances out again then it will stop other than the regular loss. I thought the same thing. And just keep enjoying your new hair cut and the time will pass faster than you think once you stop thinking about it all the time... I thought for sure I would have no hair left by the end of this but it is better and I have tons of new little sprouts now that are growing like weeds. You will start to see them too in a month or so... And no, I didn't ask my GI to take the supplements, I told him I wanted to and he said if it doesn't make my symptoms worse then go for it and see if I can find some relief... it is alot of trial and error but the supplement you got has a good list of vitamins and good amounts too. Keep your chin up and it will get better...
Posted 9/20/2011 3:22 AM (GMT -8)
So I'm taking the biotin and vitamin D and my hair continues to fall out at an alarming rate. This morning I counted 35 hairs on my pillow and comforter, then brushed it and got another twenty more. I was feeling cocky and lowered my asacol dosage from 3 3x/day to 2 3x/day to see if that would slow it down at all and woke up to find blood on my stool. Not smart. I took the regular dosage this morning and topped it off with a hydrocortisone suppository.

Should I just accept that going bald is going to be the price for maintaining remission? I try not to think about it but it is completely depressing me, as is the fact that I am now at a point in this disease when I am going to be heavily dependent on medications for the rest of my life.

Any ideas of how to cope with seeing the one aspect of yourself that you truly liked literally going down the drain, and possibly never coming back?
Posted 9/20/2011 6:52 AM (GMT -8)
Good Morning Fadoozle,
I want to laugh at you for counting the hairs because that was SO ME!!! I know it is not funny when you are going thru it, it made me cry everyday until I accepted that God wanted me to let my hair go for my health and have faith that it would come back just as beautiful as it was before I got sick. It is normal to lose approx 100 hairs a day being healthy with no medications.. so you are not past that normal shed amount and if so not that badly... I know it is hard to ignore it, but ignore it! The less you stress over it the better you will be... it takes time for your body to shed the hair that was "damaged" or starved in your illness... and at the same time, you are filling your body back up with vitamins you need and probably were depleted in... so that will take time to get you back where you need to be. Even if your hair falls completely out ( And I am NOT saying that is going to happen!!!) it will come back... start watching the front of your hair at the hair line and after you blow dry it before you flat iron or anything go outside in the sun with a mirror... look at the top of your head, you will start to see a lot of new little hairs sticking up everywhere... keep taking the biotin and that hair and nails supplement and don't drop the dose of the 5ASA... that is just asking for trouble in my opinion...I think the amount of medication is just a minor price to pay for a somewhat normal life with UC... Hun, your hair does not define you... people don't love you for your hair, it is for you! Love yourself thru this and it will get better everyday... :)
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