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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade hair loss?


06-27-2017, 04:39 PM   #1
Chelsey79
 
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Remicade hair loss?

My GI swears remicade doesn't make your hair fall out but I have lost half my hair with just the loading doses. It falls out daily not in bunches but is drastically thinning by the day. Has anyone had hair loss with it ? I noticed it thinning 14 days after starting this med. I just had my illeocecal valve and 11 inches of small intestine removed in January while 26 weeks pregnant. Remicade was what we decided to try after surgery to relieve unresolved issues and to achieve remission
06-27-2017, 06:11 PM   #2
aypues
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I've read that it can do that but it never happened to me, and i'm on a very high dose. I think it's highly variable who gets it.
06-27-2017, 06:20 PM   #3
ronroush7
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I was on it a while back and personally didn't notice it but everyone is different.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-28-2017, 07:56 AM   #4
JessPeper
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I do not have the answer to your question, as I have never used remicade. I just thought you should know you're one tough cookie to go through all of that while carrying a baby!

Hope all is well now! Best of luck to you!
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3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17


Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
06-28-2017, 10:10 AM   #5
Bufford
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I had to go off Remi after the 3rd loading dose, but my hair kept falling out for more than 6 months after stopping treatment. I had a bad lupus like reaction that got worse with each dose, problems began shortly after the 2nd dose, then after the 3rd it was clear that it was the wrong treatment.
I'm off all meds now except for salofalk enemas, and have gone natural. The hair that I lost does not seem to be returning, lost most from my head, but my beard remains thick.
06-28-2017, 11:56 AM   #6
Chelsey79
 
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Did you loose it in patches or only thinning like I described ?
06-29-2017, 09:55 AM   #7
ShawnK
 
Join Date: Jun 2017
Location: New York, New York
My wife was diagnosed Crohn's year ago. She also lost half of her hair.
06-29-2017, 10:45 AM   #8
Bufford
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Did you loose it in patches or only thinning like I described ?
It fell out the same way. I first noticed that there was more hair in my hair brush, then my fears were confirmed when combing my beard that the beard was falling out too all over the counter top. This started happening after the 2nd loading dose. At the same time the skin on my face was peeling off like old paint. My face developed the familiar lupus butterfly rash.
I reluctantly took the 3rd dose, but it was clearly related to the Remicade. I stopped after that. For months going forward the symptoms remained, more hair fell out, but my beard was the first to recover, but my head hair remains thin to this day. Lupus symptoms subsided over the summer, but it took 8 months before I could get my colostomy bag to stick to my skin for its normal duration. Normally I get 5 days before I change it, but during the Remicade, the glue would fail by the 3rd day. Horrible treatment, just horrible. However, for others it has been a miracle.
06-29-2017, 11:00 AM   #9
Chelsey79
 
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My wife was diagnosed Crohn's year ago. She also lost half of her hair.
Did it start growing back? Or did she remain on the treatment?
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