Humira and excessive (?) hair loss

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kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 5/20/2009 7:50 AM (GMT -6)   
I've been on Humira since October and my last colonoscopy ( a month ago) showed no sign of active disease. Woo-hoo! I have the humira side effect of joint pain, but its mostly an annoyance, so it doesn't bother me too much. But I have a lot of hair loss. I fill up the shower drain every shower and now its coming out almost in clumps, but not exactly. My gi blew it off when I mentioned it months ago, but the hair loss has ramped up since then. I'm trying to be objective about it, not vain, but my hair is my best feature! I really can live with scarves and such, but I am worried about this much hair loss meaning that the humira is causing problems in my body. But its working! Any experiences, advice?
diagnosed w/Crohn's 11/06. 35f with 2 boys and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 5/20/2009 11:26 AM (GMT -6)   
I have been trying biotin supplements. they seem to help but I still have thinner hair than before. I also take folic acid but not as much as I should (tummy gets upset sometimes)
 
There have been some other posts on this but I know the search is not always the best.
 
I would recommend some supplements. I think many medications deplete us of the vitamins and minerals our hair need such as biotin and folic acid. Both of those supplements are really cheap too!
 
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 6/17/2009 5:34 PM (GMT -6)   
I'm having hair loss from humira now as well...been on it now for 3 months and it is finally working for me...if you lose hair from this med, does anyone know if it eventually stops and grows back while you are still on it?
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 1200mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex and 1000mg of cipro
Past meds: bactrum (side effect: rash), pentasa (tried twice in a 4 week period, severe nausea, vomiting and D), levquin (ineffective), flagyl (works, hate the side effects), enemas and suppositories (ineffective), imuran- tried 2/09, landed in the ER with severe back pain and raised liver funtions....
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6796
   Posted 6/17/2009 6:06 PM (GMT -6)   
Hair loss while on the anti-tumor necrosis factor meds like Remicade and Humira has been reported by others. However, you said you have the Humira side effect of joint pain. While joint pain is listed as a uncommon side effect of taking Humira, in combination with the severe hair loss, I would talk to my doctor about other possible causes and perhaps testing for them. Humira is known to cause drug induced lupus erythematosus [DILE]. Hair loss and joint pain are very common in DILE. Not meant to alarm you, but it is something that came immediately to mind when I read your post.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 6/17/2009 6:35 PM (GMT -6)   
Hi ides... I did get tested for lupos about a month ago after reading your postings and others regarding humira induced lupos and all my blood tests (ANA,etc) were normal...I'm also seeing a rheumatologist now too...I will however mention this issue again to my GI as you never know...I see him a week from Tuesday for my first scope since humira....
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 1200mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex and 1000mg of cipro
Past meds: bactrum (side effect: rash), pentasa (tried twice in a 4 week period, severe nausea, vomiting and D), levquin (ineffective), flagyl (works, hate the side effects), enemas and suppositories (ineffective), imuran- tried 2/09, landed in the ER with severe back pain and raised liver funtions....
 


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 818
   Posted 6/17/2009 6:53 PM (GMT -6)   
I have the same promblem but I am on Remi not Humira. I have no advice for you I am going to talk to my doc about this next week.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 6/17/2009 7:14 PM (GMT -6)   
This sucks but if it's a choice between my hair or my health I will choose my health....I'm finally feeling better after being sick since November...maybe I'll start looking at wigs...my hair thinned in my 20's when I was sick with UC...at that time i had 3 heads of hair so it was no big deal...once I had my jpouch I got better and my hair became healthy but it never was as thick..so any hair loss now will definitly be significant now...
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 1200mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex and 1000mg of cipro
Past meds: bactrum (side effect: rash), pentasa (tried twice in a 4 week period, severe nausea, vomiting and D), levquin (ineffective), flagyl (works, hate the side effects), enemas and suppositories (ineffective), imuran- tried 2/09, landed in the ER with severe back pain and raised liver funtions....
 


MerryMac
Regular Member


Date Joined Apr 2006
Total Posts : 32
   Posted 6/17/2009 11:18 PM (GMT -6)   
I've been on Humira for a year+ now and haven't experienced any side effects. I inject once a week (during better times, twice a month). I'm 51. When I was in my late 20s I did have a bout of alopecia (hair loss). My hair thinned dramactically and my eyebrows were almost non-existent. After steriod treatments, and trying alternative thearpies, and a few years later, my hair stopped falling out. The large bald patches on my head starting growing hair. It never got back to “normal” but it's pretty good. Since being diagnosed with Crohns in 1995, I attribute the hair loss time as being part of this inflammatory disease... meaning my immune system has been out of whack for some time and perhaps the hair loss (and other illnesses along the way) have all been a part of this core issue: a whacked out immune system :-)

Best to talk with your doc some more (be pushy if necessary) and don't stop until you get the answers you need. This site is a wonderful resource as well. Hang in there. Things will get better.
Diagnosed with Crohns 1995. First bowel resection surgery performed (8in removed). Took Pentasa, 16 pills a day for 10 yrs. Off and on with: Prednisone, Imuran, Remicade, Methotrexate, and Cipro. 2nd surgery 2005 (another 8in), preceeded by an abcess that antibiotics couldn't resolve. Currently on Humira-one injection every two weeks. Status: all of my small intestine is filled with Crohns, except 2ft. I hope to keep it that way as long as possible. So far Humira is working, though I hate having to give myself injections. I keep positive by telling myself that things could be way worse. Doesn't always work, but I keep trying.


whatsupdoc?
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted Today 10:26 PM (GMT -6)   
i am sorry to hear that your son has ibs. i am 24 and i have had crohns for about 7 years. i take humira once a week and pentasa and mercaptopurine as well. its strange that u have joint pain from the humira bc it is for RA originally. i had severe pain in my toes for awhile and was worried but it turned out that the doc said i only have flat feet and i found that arch insoles made everything much better. i would get it looked at. i plan on adopting children or having my wife do the artificial thing just so there is no chance i give this disease to anyone. my doctor told me that there is only a 20% chance but i dont think they really know. and to me at least 20% is way way to high of a gamble. i hope you feel better. i know what the anxiety is like. i think not getting sleep only adds to it but hang in there! :)

Neskya
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/24/2009 3:52 PM (GMT -6)   
Hello -- I don't have Crohn's -- However, my husband does and that is why I am on this forum.  He was taking Humira and developed severe joint pain.  He will be seeing my rheumatologist this week -- he is seeing mine because I have Lupus and the reason I am sending this post is that one of the symptoms of Lupus is hair loss.  Please realize the hair loss occurs at least 3 to 4 months after the onset of a lupus flare. (it takes that long for the new hair growth to push the dead hair out) So think backward and see if your joint pain started at the same time.   You can also test negative for the standard ANA since by the time you are tested the flare may be past you -- but you still may have lupus caused by the Humira.  Please check with your rheumatologist -- hair loss is a symptom of Lupus! 
 
I never had the traditional facial rash that most associate with Lupus -- I had low platelet counts, swollen glands and severe joint pain -- add the hair loss to that and I was diagnosed with Lupus -- even though my ANA was negative during my first blood work.   The ANA  was positive the 2nd time I was tested.  It is important to have a urine test too as Lupus can mess with your kidneys. If you have to urinate in the middle of the night every night and it isn't that much urine and  you wonder why your body is telling you to get up -- you are not getting old!  It is a sign of kidney issues -- tell your rheumatologist if that is happening and he will check for protein and blood in your urine and your creatinine level.  
 
I realize everyone is different -- but Lupus is very difficult to diagnose and you may not be mentioning all of your symptoms to the correct doctor.  

Jimbo37
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 10/24/2011 6:22 AM (GMT -6)   

Hi Neska,

 

I am also on Humira and are suffering the same symptoms of hair loss, did you find anything to return the hair growth, as my specialist   also dismisses that it’s side effect  

Post Edited By Moderator (Nanners) : 10/24/2011 9:35:17 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 10/24/2011 10:37 AM (GMT -6)   
Hi Jimbo and welcome to Healingwell. You have attached to a post that is over 2 years old. Neska only made one post and never came back. You might be better served by starting a new post and ask your question there. Most tend to avoid these old posts as they think they already responded. Hugs!

PS: Many of our meds cause hairshedding. Folic Acid and Biotin are two good supplements to help slow it down.
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 36 years. Currently on Asacol, Prilosec, Estrace, Atenolol, Percoset prn, Zofran, Phenergan, Probiotics, Calcium, Vit D, Folic Acid, Magnesium & Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis. Currently my Crohns is in remission, but my joints are going crazy
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