I think I am loosing it or maybe not (my hair)

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Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 6/14/2009 5:14 PM (GMT -7)   
I am not sure if it is my head bugging me or that I just have so many weird symptoms.

I am loosing my hair, it is falling of constantly I have very thick hair so I am not going bald tomorrow but if it keeps falling out like it is doing now maybe I will be bold after two weeks.

My meds are now Remicade(8 weeks) and Asacol 4 *800 mg

I am afraid to mention this to my doc next week because I think he thinks I am crazy because I have so many weird symptoms. It is not my fault but the docs are having a hard time with me and I feel like I am a bothering them.
I don't know if it is because of my anxiety but I can feel really weird things in my body that usually check out if the docs examen them so I am almost always right about all the thing I have, but the docs sometimes get frustrated because they think I am crazy or something.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 6/14/2009 6:51 PM (GMT -7)   
No you're not crazy...absolutely not. I had the same issues too. JMHO, that the complaint about hair loss, to many doctors, is kinda a nonissue. Not sure if it was either or both the Remicade and the steroids that was responsible for my big hair loss (I lost over 75% of my hair in one month..it was everywhere and it was gross!) Now the sulfasalzine seems to be adding more to some of the this next round of hair loss ...

I used to have such full hair that the hairdressers had to thin it out. When I put my hair up, I couldn't find any clips or barrettes that could hold my hair. Only had to turn the scunchi once and even some of the smaller ponytail holders would not hold my hair back.

Now, I pull my hair back and I can see scalp. I feel baldspots if you will. If I had less hair I would probably be almost bald...so I count myself lucky...You know, I am not usually a very vain person, but, the loss of hair makes me cry...I don't think docs know what it really means when a woman loses here hair...cry

Last year, when I had so many bald spots, I died my hair bubble gum pink. I also thought of shaving it bald. I still haven't rulled out a wig...I'm losing a lot of hair again now, so I am looking either at pink again, or maybe blue...Comicon here I come turn Would you consider doing anything different?

I hope that you can tell your doc next time you see her/him about the hair loss and how upsetting this is, and any other questions/concerns....you may even print off what you just said, and discuss this with your doc...I hope all goes well
"The earth laughs in flowers"

Post Edited (Becoming undone) : 6/14/2009 8:13:54 PM (GMT-6)

New Member

Date Joined Mar 2009
Total Posts : 4
   Posted 6/14/2009 6:51 PM (GMT -7)   
Same thing happened to me. My hair started falling out in big clumps about a month or two after I started Remicade. I was also on Imuran at the time and my doctor (after some persuading) took me off the Imuran and within a few weeks my hair stopped falling out. This might not be of much help as I noticed you aren't on Imuran, but I figured I'd share anyway. I have also had a crazy amount of strange symptoms...nature of the beast I guess :) Hope you get to feeling better!!

Regular Member

Date Joined Jan 2009
Total Posts : 51
   Posted 6/15/2009 1:57 AM (GMT -7)   

Hi isergodur

I have experienced something similar, when I started azathioprine nearly a year ago I noticed more hair than usual was falling out when I washed or brushed it.  Since I started Remicade a couple of months ago it has been worse - I saw a photo of myself taken from the back at a wedding recently and you could see thinning patches everywhere!

Maybe you could go and see a female doctor who might be a bit more sympathetic?

Diagnosed with Crohn's disease in Sept 05 aged 24

Resection in Nov 06

Currently taking Remicade, 125mg azathioprine, iron, multivitamin, probiotics and omega 3
Previously taken Prednisolone, Entocort, Flagyl, Cipro, Pentasa

Veteran Member

Date Joined Mar 2009
Total Posts : 1118
   Posted 6/15/2009 3:37 AM (GMT -7)   
Hi i too am having the same problem used to have a thick head of hair but this last month its been falling out loads i was on remicade only had a dose and a half and since coming off  it this has happened Bev x rolleyes
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma
 No maintance drugs as such on B12 shots,iron syrup,loperimide, 20mg EScitalopram 4 anxiety.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/15/2009 6:19 AM (GMT -7)   
Many folks experience this from the meds we take and also from the disease.  Alot of people have found some relief by increasing their folic acid and maybe even adding in some Biotin.  Hope that helps.
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined May 2006
Total Posts : 38
   Posted 6/15/2009 12:27 PM (GMT -7)   
Sorry to hear about your hair loss, but glad to hear that someone is going through the same thing. My GI diagnosed me as zinc deficient and put me on 200mg supplement. It seems to be helping. I have discovered that there is no such thing as a "stupid question" when it comes to dealing with crohn's and your health. Good Luck!
27 years old- Crohn's 5 years - 2 Small Bowel Ressections/Appendectomy - Cimzia (NEW!?) - Omeprazole for stomach- prednisone - worried about future flares and surgeries - looking for support and advice

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 6/15/2009 1:19 PM (GMT -7)   
Hi My big hair complaint now is my eyelashes are short and feel like brittle sticks.. I am not on Remicade but did take it 3 years ago. Not sure if it is old age or not. I had a whack of hair lost when I first got sick and know how it feels but it did grow back. Please tell your Dr. not sure if they can help or not, but we do have alot of sideeffects sometimes that just seem to add to the mixture of living with Crohn's.. hope it grows back.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~Blessed are they that have the joy of helping others~ Moderator gail

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