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Remicade & Hair loss

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Ulcerative Colitis
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Posted 9/20/2009 1:37 AM (GMT 0)
I've been on Remicade for 10 months, and it completely "cured" me of my UC. No other drugs were working.  It has been a miracle drug, no side effects except one--my hair has been thinning slowly since I started, and I've been losing it worse lately. I have lost SO much hair. It was thick to begin with, but I have probably lost 1/3 of it, the worst around my crown, like receded, with baby thin patches throughout. I'm so worried! I have read of people having hair loss on Remicade, but I was wondering--have you heard of anyone who had it happen and stop/grow back when staying on Remicade? I intended to stay on it. I'm so glad to be well, but I'm a woman and I can't go bald!

 

Posted 9/20/2009 5:04 AM (GMT 0)
Yes, I think I have hair loss from Remicade. I started it last year in June and my hair started falling out in the fall--I've already lost half. I've tried "special" shampoo (TheraPro) and Biotin, and neither are helping. I'm in the same boat as you--I intend to stay on Remi but don't want to go bald (esecpially when I'm in my early 20's)!

I talked to Centocor and they said a few people have had hair loss due to Remicade just b/c everyone body's react differently. My GI is no help with hair loss.

Are you on any 5ASAs? Those can sometimes cause hair loss as well.

Posted 9/20/2009 4:24 PM (GMT 0)
I lost 1/2 my hair on asacol...GI switched me to colazal, but wouldn't say that it was because of the asacol. My hair stopped falling out. I don't think there is a cureall...I agree with bookworm21, everyone's body reacts differently. At times it is a double edge sword...do I switch meds because I am loosing my hair...or do I stay on my meds and loose my hair therefor upseting me in other ways. I wish I had an answer for ya.
Stay positive...think, you could be like the movie stars, they change their hair every other day!
Laughter is a response a lot of times for me...
Posted 9/20/2009 6:56 PM (GMT 0)
I'm sorry to hear this is happening to you. Has your MD said that you can stop Remicade in the future? If so, has he/she indicated that it will grow back?
Posted 9/21/2009 2:29 AM (GMT 0)
I know I lost a ton of hair in the past on both colazol and asacol. I'm not taking either now - just Remicade so I was shocked that my hair is falling out by the handfulls. I have 1/4 of the hair I used to have. What I have left is so thin and sparse its become very very upsetting. I can't style my hair to look nice anymore and have been considering a wig. I didn't think it could be Remicade because it wasn't listed as a side effect. The Remicade has been a miracle for me. Now if it is the Remicade that means the hair loss won't stop and I don't know what the heck I am going to do. THis might be the time for me to look into surgery if this is the case.
Posted 11/7/2009 8:45 AM (GMT 0)
Sorry to hear about that.. i know how awful it is as i am currently watching my 13 year old daughters hair fall out constantly.. she has had 3 doses of remicade and it seems she has lost at least 1/2 her hair. If you check askapatient.com and look up remicade you will see plenty of people having the same problem with this drug. If it worked for her as it seems to for u and alot of others my daughter would probably be happy with a healthy body and a wig.. but while it seems to have stopped the bleeding (until tonight when she was re-admitted to hosp.) she has still been off school and zombie like, just still soo ill and wasting away (dropped 40 lbs in 2 months) and now is probably going to have her colon removed :(
My point is.. while the thinning hair is terrible.. just thank god that you have that "miracle" cure..

also i am wondering if the hair will grow back normally if someone stops taking remicade??
Posted 11/7/2009 4:18 PM (GMT 0)
     Oh great!  My hair started falling out due to 6MP and I had thin hair to start with.  I have become prednisone dependent and it has caused major health issues with me so I am seriously considering Remicade in the near future.  I don't need anymore hair loss but I do have two wigs that look like the real thing but hate to wear them in the warm weather.  Try Nioxin.  You can purchase it at your hairdresser's.  It works pretty well.  I noticed a difference, not perfect but better than other products.
Posted 11/7/2009 5:51 PM (GMT 0)
I haven't had a problem with hair loss, but then I didn't on Colazal only or on imuran either. The only thing that affected my hair was steroids. They gave me thin hair on my head and very sparse on my legs. But that was compensated (!) by the increase of hair on my face and arms. I used to refer to myself as monkey girl, lol.
Posted 11/8/2009 12:07 AM (GMT 0)
     LOL...I can relate Judy.
Posted 11/8/2009 1:45 AM (GMT 0)
I think my hair has thinned some, it's hard to tell because I started to have it cut very short about the time I started Remicade. I have very thick hair so no one would notice...but it seems thinner.

I can't imagine even considering stopping Remicade just because of thinning hair, if it was working.
Posted 11/8/2009 4:33 AM (GMT 0)
My daughter's hair was falling out heavily on the higher doses of 6mp, at least we thought that was the culprit. 5 ASA's were also in the picture. Now that her dose is less, it seems to have stabilized, and the Remi hasn't impacted it further. Growing back at a similar rate to losing it--a few funny wispy strands regrowing around the crown. Think it is worth the hair loss to have a stable colon. Now, if we could only get to the bottom of her headaches--seems a similar journey. Every one of the drugs has hair loss and headaches as a side affect.
Posted Yesterday 2:13 AM (GMT 0)
A few months after I started Remicade infusions, I noticed that my hair was changing. At first I was alarmed since it seems like it was thinning out due to hair loss. The next time I went to my stylist, he said that drugs can sometimes change the texture of hair, and that in my case the individual hair strands themselves were thinner, but that I wasn't losing any. He now cuts it a slightly different way and now it looks normal. One year in I haven't lost any hair that I can tell.
Posted Yesterday 2:47 AM (GMT 0)
I was asking my Dr. about side-effects of the commonly used UC medications and specifically about hair loss. My Dr. said that many of the meds can cause hair loss. He also mentioned that hair loss can be a result of the stress your body is under from UC itself. I have fairly thin hair myself (naturally thin) and I find it looks a lot fuller when I highlight the heck out of it. Apparently bleach can cause the hair shaft to swell. Maybe it is worth a try for you! I feel for you.
Posted 6/5/2012 6:38 AM (GMT 0)
I lost started loosing lots of hair wit jusy the u.c but i think the other meds like prednison asacol and remicade at the end made me loose more i want my hair back!! I have very lil hair compared to b4
Have any of u guys got ur hair back?
I hope i get mine back now i just stoped all medicines since i just got the surgery last week!
Posted 6/5/2012 2:45 PM (GMT 0)
I lost a lot of hair either from the severe flare or from Asacol or maybe a combination. Anyway, my hair did grow back. BUT, it is a slow gradual process! For me it took a year and a half to get back to where it was at the beginning. Others have posted similar stories.
Posted 6/5/2012 11:11 PM (GMT 0)
How long have u had uc serenity?
Posted 6/6/2012 2:42 AM (GMT 0)
I started developing noticeable symptoms in June 2008. Height (or depth?) of flare was Nov 2008. Diagnosed in Jan 2009 and by then was already starting to go into remission. I've been in remission since then. Knock on wood.
Posted 2/4/2013 7:08 PM (GMT 0)
Hi,
Last year, I was quite ill with UC and was put on asacol and high doses of prednisone for about 5 weeks... it wasn't helping enough, so I was put on an iv drip of remicade along with 6mp which I guess usually goes along with the remicade - I was told that after 3 weeks that I would receive another dose of the rem... I didn't seem to have any bad reactions to these meds, and was transferred to a physical rehab center (the high doses of prednisone caused me to be unable to walk... an unusual side effect of the pred)... after one week in the rehab center, my hair began falling out in huge clumps, and within a week, I had almost no hair at all... I was told the hair loss was due to my severe illness - but I am sure it was due to the meds I had been on... It took a full year for my hair to grow back before it looked passable - but even still, it is too short to be worn in a pony-tail... I wish the doctors would have been more forthcoming about the side effects of these meds...
Posted 11/21/2013 1:51 PM (GMT 0)
I have had three doses of Remicade and will have the fourth in about a month I just noticed this past week that I'm losing a lot more hair than I usually do. It is thick and I'm used to a lot coming out in the shower or when I comb but this is getting accessive and starting to feel thinned out. if the next dose doesn't work, which I don't hold too much hope for, I should stop taking it.

I also thought perhaps because the past month and week has been extra stressful and I change my eating patterns a lot so I'm not getting the nutrients but I've never experienced this is the 10 years with the disease before but it's never been so severe either.

anyone have experience in time length for regrowth or any products that did help?
Posted 6/23/2014 11:33 PM (GMT 0)
My name is Ginger and I am 55 years old and suffer from Psoriatic Arthritis. I was on Humira when I was first diagnosed and working. When i was forced to go on disability for a variety of reasons, I had to go on NY stae medicare which would not cover humira so I had to switch to remicade. I have been on remicade for approximately 5 years. I had very thick , full, beautiful curly hair all of my life. It was one of my best features. Over the past two years i noticed my hair was falling out at an alarming rate. Spoke with Md and tried several supplements. At this point,I have lost approx 50% of my hair and no one has any answers. As someone previously posted, I am a woman so it is a great issue.
Does anyone have suggestions?
Thank you for your responses and help
Ginger
cry
Posted 6/24/2014 1:06 AM (GMT 0)
I'm off Remicade now and still not sure if that's why I lost the hair, but it's definitely started growing back all my lost volume (3-4" now!). I'm on supplements and my doc attributes growth to iron.
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