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Ulcerative Colitis
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Posted 11/26/2011 11:34 AM (GMT 0)
 I have been worried about the long term effects of Remicade. I was wondering how long some you guys have been on this drug. I have been on this drug about 2 years.

 I have had UC since 2004. It wasn't so bad with Asacol, and Imuran, and predisone as needed. Although through that time, I had been in the hospital 4 times.

 The Remicade does keep my UC in check. I am really concerned about the safety of the drug.

Thanks,

Have a great Day!

Posted 11/26/2011 2:18 PM (GMT 0)
Well, considering that Remicade is relatively new (10-15 years old), we don't know what the effects after that time period are. But as long as it keeps me in remission, I'm not too concerned about the long-term effects. No point in worrying about what you don't know!
Posted 11/26/2011 3:35 PM (GMT 0)
Thanks for the information.
Have a great day
Posted 11/26/2011 5:17 PM (GMT 0)
I have been on it two and a half years.  I worry also but you can't control what happens.  I tell myself it isn't in my hands. Good luck and try not to worry.  It has helped me alot.  I can go places and do things.  I will go off it when it stops working.  I do worry about winter coming up because my kids get sick and I get it.  Last year was bad. I was sick all the time.  Had strep twice and bronchitis.  Ugh.  I have a cold now.  I worry it will turn into something serious but what are we to do.
Posted 11/27/2011 10:34 AM (GMT 0)
wimomofthree, that's my doc's basic mantra..."what are we to do?" Since the other things we've tried have failed, can we just let you bleed to death? His response each time to my concerns about Remicade's possible side effects. I'm giving diet one last try, though, before I will start Remicade. I figure I have nothing to lose, other than the weight I've gained on 100 mg of pred a day. (argh!) I've read (and tried) the SCD, and there's another book by Sherry A. Rogers I read, but they all sound like this Candida diet I did waaayyy back in the early 90s. Friends were trying it for their Lyme disease (we live in the county in NYS with the highest Lyme rate in the nation), and they suggested I try it for my Fibromyalgia. It's your basic "no sugar, no dairy, no wheat or most other grains, no yeast, nothing processed or unnatural" diet, and I have to say it did help the Fibro symptoms, until we took the kids to the ocean and it became too difficult to follow there. Once I fell off the wagon it never got back on. Hubby was glad, though as I was already thin and couldn't stop losing weight. At 5'5" I weighed 105 pounds by the time I stopped it, and I ate constanly. I guess it was a bit too thin, and I was always starving.
I do a whole lot less now, so I don't anticipate problems like that one- just my basic lack of will power! And nothing will stop me from putting a spoon of honey in my morning coffee! :)

Sorry- TMI, but just to say how reluctant I am to start the biologics! The very fact they're so new gives me pause. But on the other hand, what are we to do?
Posted 11/27/2011 4:22 PM (GMT 0)
I know how you feel.  I am scared also.  I am allergic to all 5 asa's and imuran.  I was diagnosed in March of 2009 and was on remicade by July 2009.  I could have surgery or so could you but that scares me also.  So, my idea was I will try all the drugs and if they work I am suppose to be on them if they don't I will do the surgery.  I was also trying to hold off until my youngest was older and I didn't have to carry her and she knew not to jump on me.  She is 3 and a half now so I say another year or two would be nice.  I will probably try Humira if the remicade stops working then surgery.  surgery has its own risks and issues.  I am glad though that most people say it works and they are happy they did it.  I was told I will have surgery at some point so I guess I am prepared for it.  I don't know what the remicade will do to me and I think that also, what I am going to be on the remicade for ten years.  what is that going to do to my body.  UC sucks doesn't it.  The meds are scary and so is the surgery.  Ugh!!!! Good luck. 
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