Confused about recent hair loss, help!!!

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Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 8/20/2007 9:09 AM (GMT -7)   
Hi Everyone,
 
I tapered off pred about 2 months ago following a bad flare.  I also just ended Flogyl.  The only meds I'm still taking are my Asacol (which I've taken for years) and Azathioprine (I'm about 3 months on this).  My hair started falling out last week.  It seems to come out from all over my head, with no reason, in bug clumps.  I have lots of hair so nobody can tell yet, but at this pace I might have a month or 2 before its gone.   I just touch it and some comes out - showers are especially traumatic since I lose so much in there.  Anyone know if hair loss from Azathioprine is permanaent (I'm assuming its from this new drug)?  How much will I lose?  And if I go on Minoxodil or some sort of hair loss preventative pill will it work?
 
Any advice would be appreciated - I'm in complete panic. I cry all morning at the thought of combing my hair.
 
thanks!  I hope you are well today.
 
 
 
Diagnosed with UC 8 years ago
Asacol / 12 per day
Canasa / 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!)
Azathioprine / 100 MG Day
Levaquin 1 per day
Flogyl 1 per day
Diagnosed with Crohn's 6/26/2007
 
 


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/20/2007 9:35 AM (GMT -7)   
A woman my mom works with cannot use Pantene products since it makes her hair fall out. It took about a year using a different product to stop the hair loss. I often wonder if that is my problem, granted I have had CD for 20 yrs and been using Pantene (most commonly) for a cpl yrs. Even when I was off all CD meds (a cpl months post op) I was still having the hair loss (yup I am on Folic Aid suppliments as well). I think I find more of my hair when I vacuum rather than my husbands or cats, my husband sat in my pc chair to fix something on here the other week and realized there was a carpet of my hair over the real carpet from the hair loss. Luckily I have thinck hair and lots of it. I have to clean my hair brush very often since it gets covered. I have a drain cover in my shower that I have to clean daily or the water wont drain and it is like a dome not like a valley type drain cover.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/20/2007 9:37 AM (GMT -7)   
I am not sure about the Azathioprine as the cause, but I had another thought. Have you had anesthesia recently? That can cause increased hair loss temporarily afterward. i know that has happened with even the mildest anesthesia for me. I also found when I went to extremely low fat diet, my hair loss skyrocketed.
Hope things get better! Take Care
Dx'd '90 (emergency rupture), symptoms ignored long before that, stable with Pentasa, '03 fistulas and bad flagyl reactions, only on B12 and vitamin supplements now
I'm riding on the escalator of life....


Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 8/20/2007 9:42 AM (GMT -7)   

Hi,

 

The last Anesthesia I had was about 2 months ago when I had a colonoscopy done.  But the hair loss just started. 

 

I use pantene on and off...maybe I shuld switch for now to something else....


Diagnosed with UC 8 years ago
Asacol / 12 per day
Canasa / 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!)
Azathioprine / 100 MG Day
Levaquin 1 per day
Flogyl 1 per day
Diagnosed with Crohn's 6/26/2007
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2007 11:20 AM (GMT -7)   
No the problem is the the Imuran & Asacol. I used Imuran and 6mp a few years ago and I had alot of hairloss, enough for my hairdresser to notice. You need to ask your doctor for a prescription strength RX for Folic Acid. The over the counter stuff isn't strong enough. I have been using Patene for years and it isn't the cause for my hairloss. Mine is from the Asacol, I have just got to ask the doc for the Folic Acid RX. Hope this helps.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2007 11:21 AM (GMT -7)   
Forgot to add some folks are taking Biotin and have had great success with that. Its a supplement you can get at the health food stores.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 8/20/2007 11:57 AM (GMT -7)   
Thanks everyone - I think I'm probably going to switch to Rogaine for Girls just for now to be sure, and get the Biotin tonight. On Monday I have an appointment with the doc and I'll get the RX for the Folic Acid. Do you think the hair I lost will grow back? I just pulled my hair into a pony tail and no lie it's like 25% thinner poinytail than I used to have. I really did lose a lot of hair even though it doesnt look like it yet...

WAAA!
Diagnosed with UC 8 years ago
Asacol / 12 per day
Canasa / 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!)
Azathioprine / 100 MG Day
Levaquin 1 per day
Flogyl 1 per day
Diagnosed with Crohn's 6/26/2007
 
 


Miss_patience
Regular Member


Date Joined Mar 2007
Total Posts : 29
   Posted 8/20/2007 12:48 PM (GMT -7)   

Warning, this is a long response!  You have already received a number of helpful answers and advice, but I just wanted to add my 2 cents because I have been through this twice, and each time I have been so incredibly upset, to the point where I would upset my UC all over again.  I am sure you know that stress is not helpful for anyone, especially us!

Anyway, hair loss is a side effect of the asacol as well as most of the 5 ASA drugs.  Hair loss can also occur with imuran (aza) and 6mp although it isnt always noted by the pharmacy. 

Here is a short summary of my story.  I was diagnosed in 05 with uc.  My dr wasnt all that good, and at that time since the case was mild didnt prescribe any meds.  I flared in april of 05 and was getting married in june 05- so not taking any chance, and not really liking my dr, I went to the ER and they found GI at the hospital and prescribed prednisone and canasa and an emema.  I got better within hours of the pred.  So I tapered to 10mg (started at 40) and remained on that until after my wedding- to avoid any problems and then finished.  In august 05 I started to loose lots of hair that continued until the end of Sept 05.  Drs didnt know why.  Then I was completely in remission- until March of 06 when I got VERY sick.  I started the pred again, but it wasnt helping.  Eventually went into the ER and they admitted me.  I was started on asacol, and released a few days later.  The asacol wasnt doing enough, so I was started on imuran (AZA).  It took awhile for the imuran to kick in but finally I was doing much better and tapered off the pred again (hopefully for the last time!)  Then in June 06 hair loss came back with avengence.  Much worse than the last time- to the point where my husband (bless his soul!) was washing it for me, brushing it and then cleaning it up for me.  I blamed it on the asacol so my dr stopped that and started colozal and he said if it were from asacol the loss would stop in about 2-4 weeks- it didnt. The loss became apparent in August- I have lots of thick hair thank god!  He began saving the hair each day and finally stated showing me at the end of august that it was slowing down.  Finally it stopped  at the end of september and began regrowing.  I had spurts of hair all over and now nearly one year later you would never know- except I have some clumps of hair that are much shorter!

Now that you know my story, here is my opinion.   Yes, it could be a reaction to the meds, but stopping your meds could send you into a flare.  If you had much bleeding during your most recent flare it could be from anemia and you should have your iron levels checked.  It could be from the AZA but I dont think you would have a tremendous loss.  The conclusion I came to for myself is that it was from the prednisone.  I noticed that approx 2 months after my taper was complete i would loose hair- happened both times I went off it.  I know that prednisone causes extra hair growth and so some drs will say this is impossible, but it causes hair loss while you are on it.  What about when you come off?  My personal opinion is that after coming off prednisone your hormones are wacky and it causes hair loss.  I know this is just my opinion but it comes from personal experience both times.  Depending on how long you were on the prednisone will determine how long the hair loss lasts. 

DONT WORRY it will come back, I know easier said than done, but I have been there and the last thing you need is extra stress.  To help, here are some helpful tips I have learned.  Nioxin is a wonderful shampoo for thinning hair.  Biotin is a great supplement.  If nothing else you will have strong nails, but you have to take alot.  Under supervision of a nutritionist I took much more that the suggested dose on the bottle.  Have your iron and ferratin levels checked, you may need a supplement.  Folic acid supplements are also great for many reasons.  I also used a satin pillow case to decrease the amount of hair in my bed when I woke.  Rogaine for women helped along the new growth. One last note, try not to pull your hair into a ponytail, maybe use a headband to keep it out of your face?  You dont need the extra stress on the hair folicles.  In the end whatever is going to fall out will because it is already in the stage of detaching itself.

I know this has been a long post, but I feel for you-I really do.  I know what it is like to go through this and it is very difficult for others to understand.  Have patience and give it some time.  

Good luck and keep us posted!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/20/2007 1:13 PM (GMT -7)   
Yes your hair will grow back. My hair did.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 8/20/2007 1:41 PM (GMT -7)   
I wanted to thank you all for your posts and taking the time out to help me with this. I will definitly try your suggestions and also try not to stress out about it - knowing it will come back is a releif in itself!! There is some great advice here and I'll post back after I pick up some of these items and see my doctor on Monday to let you all know how this progresses.

Miss_Patience, that is some story - and very close to my own. I had a flare that lasted about 2 mnths, and 2 weeks of it I was bed-ridden. The prednizone was a miracle, but I experienced the same battery of side effects as everyone else mentioned (eating constantly, moodswings, weight fluctuations...) and it had me better after a month. In total I took it for 2 months, the second month being the taper month where I decreased 10 mg each week - my doctor couldnt wait to get me off it. I had a mix of the same drugs you mentioned - Asa, AZA (Imuran), pred, canasa, and Rowasa. I wish I had known that hair loss would come later - I would not have freaked out about it. I've really been a mess, just this morning I was a blubbery disaster afraid to use my brush (my poor b/f has to put up with the whining in the morning), and I busted out into tears today when some girl in the elevator complemented me on how pretty my hair was. Knowing there are things I can try to help stop it, and that it's normal, is really a comfort.


Thanks everyone again, and I hope you are all feeling better today than yesterday!! :)
Diagnosed with UC 8 years ago
Asacol / 12 per day
Canasa / 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!)
Azathioprine / 100 MG Day
Levaquin 1 per day
Flogyl 1 per day
Diagnosed with Crohn's 6/26/2007
 
 


sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 8/20/2007 1:48 PM (GMT -7)   
I have been using Biotin for about 4 months now. My hair loss has slowed but definitely not stopped. I am sure that it is my Pentasa doing it to me. I might have to ask for the RX Folic Acid to see if that will slow it any more.

Currently 3 x per day 1000mgs Pentasa, Aciphex, Lortab, Ambien, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt, back on the prednisone (10mgs this week) and Entocort (9mgs).

Headed back down the CT, SBFT road for a potential SBO.  Great.


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/20/2007 2:00 PM (GMT -7)   
I have the Rx for folic ad still have the hair loss :(
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 8/20/2007 2:17 PM (GMT -7)   
My hair started falling out also.  I probably lost 1/4 to 1/3 of it.  And I don't have much to lose.  I was on 6-mp and pred prior to it falling out.  I had also read that  1-3 months after a major illness or surgery, your hair goes through a transition and can start to fall out.  When I brought it up to my PCP she said it was possible.  I also brought it up to my GI and he said it was most likely from the 6-mp.  Anyway it stopped after about 6 weeks and now it's growing back a pretty white and curlie.  I really love it.  So I guess a few weeks of trauma turned out okay in the long run.  I've gotten so many compliments on it even though I haven't done anything with it yet.  Still trying to get the short ends to lengthen up before I cut my hair.  And since I'm a grandmother I might as well not color it anymore.  At least it is white and not gray.   tongue tongue tongue
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression


Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 8/20/2007 5:30 PM (GMT -7)   
I have been on Colazal for years and while there has always been some hair los, it was nothing compared to what i am expereiencing now as I taper off the Pred. In the past 2 months as I've gone from 20 mgs down to now 1 (I should be off the stuff within the next day or so) I've noticed how much hair is coming out in my brush or just as I run my fingers through my hair. So, I think its definitely the tapering of the pred. Hopefully it will grow back.

Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 8/20/2007 7:38 PM (GMT -7)   
I was on the same as you were, pred and flagyl and everything to get me off my last major flare, and I started getting the same hair loss you are describing for a bit, but after a month or so, it completely stopped and went back to normal, after I got off all those strong meds for the flare and now its all fine and since my hair is thick too no one would of noticed and its all back or normal now, so I wouldn't worry too much, I had that same experience and it was all completely temporary, but of course, every person is also different, so hopefully yours stops on its own too. You could ask or consult a doc to see what they say.
26 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet.  2 bad Flares so far. Taking Entocort.


Allison_82
Regular Member


Date Joined Jul 2005
Total Posts : 47
   Posted 8/20/2007 9:42 PM (GMT -7)   
Hey Pampers,

I too have lost some hair with Crohn's...some before I started any meds (vitamin deficiencies from malabsorption, I think), and then again when I started Asacol and Imuran. When I became pregnant, I started on a RX strength folic acid, and right now my hair looks fabulous. I know this is probably partly because of the pregnancy, but I plan to stay on the Folic Acid too to see if I can keep this hair in.

So it DOES seem like hair can come back! YAY for that!

Allison
Allison
24 year-old female, Dx in 7/2005 with CD and Crohn's colitis
Rx: Asacol 4.8 gms/day (12 tablets!), Imuran 100 mg/day, Canasa suppositories
Pregnant with Baby #1!


janetpjohn
Veteran Member


Date Joined May 2004
Total Posts : 682
   Posted 8/21/2007 6:05 AM (GMT -7)   
The hair will grow back. My daughter calls it monkey hair, because she has long hair and begins to see all these little ones sticking up. My personal opinion is that the hair loss is from illness, not the meds. Almost everyone says they are tapering off something or just started some new drug, but it's rarely the same drug. Look up tellogen effluvium.
Janet

Pampers
Regular Member


Date Joined May 2007
Total Posts : 76
   Posted 8/21/2007 10:02 AM (GMT -7)   
Hi Everyone!!!

Now I am feeling releived - I'm sad you are all experiencing the same thing though. It's scary when it first starts and now that I know its common I'm not as scared.

Last night I bought Biotin, OTC Folic Acid (till I see my doctor on Monday and get a real RX) and since I couldnt find Nioxin shampoo, I bought an organic Biotin-based shampoo and cnditioner. I also got a good detangler so when it comes tim to comb it out after a shower the comb will glide easier and not rip out the snaggles. I started taking my azathioprine again, which I had been skimping on because I was blaming that. I'll talk to my doc first now before sopping any meds.

Thanks everyone for making me feel better, and I'll be sure to post back when I get my RX and maybe an explanation fro the doctor (I had some blood work done yesterday, maybe theres more clues in the results). Hope you all have a great day!!

:) Heather
Diagnosed with UC 8 years ago
Asacol / 12 per day
Canasa / 1 per day
Rowasa / 1 per day
Prednizone / 40 MG Day( finished taper!!!)
Azathioprine / 100 MG Day
Levaquin 1 per day
Flogyl 1 per day
Diagnosed with Crohn's 6/26/2007
 
 


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 8/21/2007 6:08 PM (GMT -7)   
I never had hair loss with Azathioprine but when I was on prednisone I lost alot of hair.It did come back but it did not come back in thick.I now have thin hair.
Curley
.........
 


Alice_Rosengren
New Member


Date Joined Jul 2011
Total Posts : 3
   Posted 7/18/2011 1:14 PM (GMT -7)   
Dear 'Pampers'

I keep reading this thread bc it seems so hopeful. This is the second time within the last 8 months that I am experiencing hair loss and with every day that it keeps falling out my self worth sinks a bit deeper.

I was diagnosed with RA last fall and since then I've been on Aza 75 mg and Predni (now 6mg). The taper was really slow and I just don't get why it started falling out again. Even my blood shows optimal levels except on the CRP (14).

How long do I have to tolerate this? Do I even have a chance to get back to my 'old' hair? And did yours grow back?

TakillRa
Regular Member


Date Joined Nov 2010
Total Posts : 489
   Posted 7/18/2011 2:16 PM (GMT -7)   
Well mine has finally stopped and from a few nurses i have been talking to, they seem to think it was the pred... it takes at least a year to get out of your system no matter how long you've been on it... Showers were the worst for me too, I'm talking handfulls of hair..thank the gods i have tons of hair, so only i would notice it, but you should could see it all over the house. Had a shower today, and it's back to "normal".
6 years with crohn's
remicade
married for 13 years(been together for 20 this march)
39 years old with a lovely 9 year old daughter
"Bellydancer, Snakecharmer...Bellydance Snakecharmer!"...Beats Antique

sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 7/18/2011 7:48 PM (GMT -7)   
In 2009 someone told me "You got a little of the receding hair line there" I was like me? No way... he was like that looks like how mine started are you sure its always been like that I was like oh yaaaaaaa. ha..2 years later im like wow I def have a receding hair line. lol. I also notice tons of hair in the shower over the last year, which seems odd it looks longer than my hair, I doubt its my roomies im guessing its mine although I was even in denial about that with the receding hair line finally visible even to myself. Anyway def time to load up on some supplements I been on imuran too long. Im hoping its the imuran which would make sense, when that guy made the comment I had been on imuran for a good bit and have been on since.
I'm becoming less defined, as days go by. Fading away, wellyou might say im losing the focus. Kinda drifting into the abstract in terms of how I see myself.

kportgirl
New Member


Date Joined May 2011
Total Posts : 5
   Posted 11/20/2013 8:23 PM (GMT -7)   
Please help!!! I am losing my hair! Back story: I was on Pred. for almost two years unsuccessfully. I spent a month in the hospital last summer and underwent a double re-sectioning (ileum, duodenum), TPN, and heavy IV steroids. I weaned off the pred. in September. I have lost about 40 lbs. since I came home from the hospital because I cannot really eat anything or I get sick. I have always had extremely thick hair but, recently it has been falling out by the handful. The other day in the shower so much fell out it clogged the drain. I don't know why this is happening or how to stop it. I really can't deal with being bald on top of everything else. I would really appreciate any advice from people who are/have been in the same boat.
Thanks guys!!!
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