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Been on Remicade for a long time.

B

Billy the fish

Hi all my name is John I have crohns since the age of 17 I am now 49 this year the big 50 for a long time when I was young my crohns was out of control I had part of my bowel and small intestine taken out. Then I remember so well I was in Hospital just about to have a permanent colostomy bag which was devistating at my age then they said there was a new drug Remicade which I jumped at the chance and have now have been having infusions every 8 weeks since 2000. Yes 16 years I think I my have been one of the first in the UK my only worry is the long term affect. My doctor only yesterday said that they are looking in stopping my drug my only worry is will I go back to how I was. I would love people's thought on this Thank you if you do read this sorry for my spelling :)
 
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ronroush7

ronroush7

Welcome. Did the doctor mention putting you on any other biologic? Did he say why they were taking you off Remicade?
 
fuzzy butterfly

fuzzy butterfly

Well-known member
Hi Billy the fish , welcome, glad that the remicade worked for you. As Ron asked did he say why he wanted to take you off it, and what he intends to replace it with. If it is working well with no problems then why stop it.
Please let us know how you get on. Best wishes 💕
 
B

Billy the fish

Hi I was in remission for a while all my results were coming back good so the specialist wanted me to stop. I have not had an infusion now for 12 weeks 4 weeks over what my usuall infusion was in Every 8 weeks. The shakes are over my body like a pins and needles and I'm so tired and feel uncomfortable in myself
 
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