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Crohns and Colitis Exchange

This is a place for members with Crohn's Disease or Ulcerative Colitis to get ... more

Last Reply:

Anyone take Remicade before?

LunaNatasha posted:

My doctor just recommended that I take Remicade....I was looking up the side effects and what not, but I'd love to hear some real stories. Have you used it? What side effects did you have? How long were you on it? What is your general opinion? It looks like a pretty scarey drug to me.

11 Replies |Watch This Discussion | Report This| Share this:Anyone take Remicade before?My doctor just recommended that I take Remicade....I was looking up the side effects and what not, but I'd love to hear some real stories. Have you used it? What side effects did you have? How long were you on it? What is your general opinion? It looks like a pretty scarey drug to me.

jaimem92 responded:

I've been on Remicade since Feb 09. It's kept me in remission pretty well. But as you can see I get sick pretty easy. Keep in mind that I work in a hospital though, so I'm around sick people time. However, you said you worked in a school right? Also lots of germs. So basically if you start Remicade, become a germaphobe, I haven't had any of the other complications and like I said, it really keeps my Crohn's in check.

Report This| Share this:Anyone take Remicade before?I've been on Remicade since Feb 09. It's kept me in remission pretty well. But as you can see I get sick pretty easy. Keep in mind that I work in a hospital though, so I'm around sick people time. However, you said you worked in a school right? Also lots of germs. So basically if you start Remicade, become a germaphobe, I haven't had any of the other complications and like I said, it really keeps my Crohn's in check.

LunaNatasha replied to jaimem92's response:

Thanks for your story. I'm sorry your GI isn't supportive right now and that you have to go such a distance to get there...that's crazy! (from your other post) I'll be praying for you.

Report This| Share this:Anyone take Remicade before?Thanks for your story. I'm sorry your GI isn't supportive right now and that you have to go such a distance to get there...that's crazy! (from your other post) I'll be praying for you.

Jayl955 responded:

I had remicade infusion for i think around a years time. I didnt have any side effects with it at all. I hope it works well for you.

Report This| Share this:Anyone take Remicade before?I had remicade infusion for i think around a years time. I didnt have any side effects with it at all. I hope it works well for you.

OyWithThePoodlesAlready responded:

Only thing for me so far after 6 months is last time I got raging athletes foot (literally, an hour after I left, my foot was on itching like no tomorrow, and by the end of the day it was on FIRE).

annoying but in the grand scheme of things, not a big deal

Report This| Share this:Anyone take Remicade before?Only thing for me so far after 6 months is last time I got raging athletes foot (literally, an hour after I left, my foot was on itching like no tomorrow, and by the end of the day it was on FIRE). <br /><br />annoying but in the grand scheme of things, not a big deal <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">

jaimem92 replied to OyWithThePoodlesAlready's response:

I get itchy feet too.. and my callouses are bad, so as long as i keep those grinded down, they down seem to itch as bad.

Report This| Share this:Anyone take Remicade before?I get itchy feet too.. and my callouses are bad, so as long as i keep those grinded down, they down seem to itch as bad.

LunaNatasha replied to jaimem92's response:

anyone lose their hair? or get nauseous?

Report This| Share this:Anyone take Remicade before?anyone lose their hair? or get nauseous?

jaimem92 replied to LunaNatasha's response:

Nope- I have the thickest hair you've seen and have never gotten nauseated. I get pretty sleepy during and afterwards.. but that's about it. I just tend to take it on a Friday and take is easy that weekend.

Report This| Share this:Anyone take Remicade before?Nope- I have the thickest hair you've seen and have never gotten nauseated. I get pretty sleepy during and afterwards.. but that's about it. I just tend to take it on a Friday and take is easy that weekend.

HannahLeigh89 replied to LunaNatasha's response:

I was on Remicade for three years and I never had hair loss from it. I was pretty nauseated most of the time, but I don't think it was in correlation to the Remicade. When I went off of the Remicade and began having sugeries and taking methotrexate is when my hair began falling out. I upped my vitamins to two prenatal vitamins daily and my hair has mostly come back.

Report This| Share this:Anyone take Remicade before?I was on Remicade for three years and I never had hair loss from it. I was pretty nauseated most of the time, but I don't think it was in correlation to the Remicade. When I went off of the Remicade and began having sugeries and taking methotrexate is when my hair began falling out. I upped my vitamins to two prenatal vitamins daily and my hair has mostly come back.

lbcash replied to LunaNatasha's response:

I took Remicade for over a year and unfortunately I did experience hair loss. It came out in clumps. I actually put the hair from one day in a ziploc bag and took it to my doctor. But, it kept me in remission so well that my doc thought maybe I should just increase my vitamins. After a year of the remicade I didn't lose all of my hair it just thinned a lot, but I was willing to cope with it because the Remicade was working so well. I did however after a year switch to Humira injections for convenience and cost. I was driving two hours to spend three hours in an infusion clinic for the infusion. Humira I inject at home and it has worked as well as the Remicade. I didn't choose to stop the Remicade because of the hair loss, and I believe the Humira took so well because the Remicade did such a good job of getting me in remission (just my opinion). I still have thin hair but hey, I'm in remission!!

Report This| Share this:Anyone take Remicade before?I took Remicade for over a year and unfortunately I did experience hair loss. It came out in clumps. I actually put the hair from one day in a ziploc bag and took it to my doctor. But, it kept me in remission so well that my doc thought maybe I should just increase my vitamins. After a year of the remicade I didn't lose all of my hair it just thinned a lot, but I was willing to cope with it because the Remicade was working so well. I did however after a year switch to Humira injections for convenience and cost. I was driving two hours to spend three hours in an infusion clinic for the infusion. Humira I inject at home and it has worked as well as the Remicade. I didn't choose to stop the Remicade because of the hair loss, and I believe the Humira took so well because the Remicade did such a good job of getting me in remission (just my opinion). I still have thin hair but hey, I'm in remission!!

mattdamonishot responded:

I have been on Remicade since 4/11 and i has worked WONDERS for me. I LOVE it!!It does tend to wear off in about 5 weeks though but i have 5 BEAUTIFUl weeks of feeling well in between. I have had ZERO side effects except I tend to get colds and such frequently. I will take it though.

Report This| Share this:Anyone take Remicade before?I have been on Remicade since 4/11 and i has worked WONDERS for me. I LOVE it!!It does tend to wear off in about 5 weeks though but i have 5 BEAUTIFUl weeks of feeling well in between. I have had ZERO side effects except I tend to get colds and such frequently. I will take it though.

twentysomething14 responded:

Hey LunaNatasha! I have been on Remicade treatment for over 2 years now and it's my miracle drug! Im so thankful that my doctor recommended it for me. Im not sure what you're getting Remicade for, but I have Ulcerative Colitis and it's been amazing in helping me maintain it. I personally have not had any side effects, only that Im really exhausted after the treatment. That normally lasts for two days before wearing off. You'll want to have someone drive you to and from your treatment. Also...my doctors tell me to take 2 Tylenol, 2 Benadryl and 2 predinsone beforehand to prevent infection. But you'll have to check with your doctor if they want you to take that. And I personally haven't been nauseous or experienced any hair loss. Unfortunately everyones body responds differently. But It will help you!! Good luck with this treatment, keep us posted on how it goes!

Report This| Share this:Anyone take Remicade before?Hey LunaNatasha! I have been on Remicade treatment for over 2 years now and it's my miracle drug! Im so thankful that my doctor recommended it for me. Im not sure what you're getting Remicade for, but I have Ulcerative Colitis and it's been amazing in helping me maintain it. I personally have not had any side effects, only that Im really exhausted after the treatment. That normally lasts for two days before wearing off. You'll want to have someone drive you to and from your treatment. Also...my doctors tell me to take 2 Tylenol, 2 Benadryl and 2 predinsone beforehand to prevent infection. But you'll have to check with your doctor if they want you to take that. And I personally haven't been nauseous or experienced any hair loss. Unfortunately everyones body responds differently. But It will help you!! Good luck with this treatment, keep us posted on how it goes!

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