Coming off remicade/infliximab

[1125463]

Hi guys,

This is my first post on here. I have been on inflixmab for three and a half years which is provided for me by the British NHS. This has pretty much allowed me to achieve a quality of life almost as good as I ever had (a few skin problems aside).

I one day hope to come off inflixmab and maybe be medication free. Has anyone had any experience of this? How did it go?

The danger with Infliximab is you cannot go back on it after a certain period of time.

Thank you for any help people can offer.

Edit - I have two fistulas which are healing well (although slowly) so think I will certainly need another 18 months on the juice.

 

[moogie]

This is entirely a personal opinion,

Seems to me that some people once their medication is finally works and they are in remission feel that they can stop taking medication and everything will be fine.

This plague that we have is chronic which means you will always have it unless they find a cure. This also means that if you stop taking your medication you will get sick again.

My thoughts are if you are feeling good with the medication you are taking do not stop taking it ever.

I'm no doctor but it sure sounds right to me.

So if you are doing OK don't ever stop taking the medicine that is making you OK.

Just my 2 coppers worth.

 

[1125463]

I know but there are many cases of people coming off it and remaining in remission. Its not that I am ungrateful for it but having to go every 8 weeks is quite restricting in that I am only 21, was diagnosed at 18, and would like to travel and maybe teach abroad and its not really possible at the moment because of this.

 

[tots]

Moogie-

I agree-I have fallen into that trap and wont do it again.
Even if you don't "feel" it the disease is there and very likely
there and could progress. I was to sick trying to get a dx to
get that sick again.

Lauren

 

[SdN]

This is a life changing disease and there aren't any known cures. That being said it's a personal decision. If you feel the risk is worth it then it's totally up to you. Personally, having experienced 2 years with uncontrolled crohn's, unless they find a cure I plan to be on medication the rest of my life.

 

[kllyeve]

It is hard to adjust to the fact that although you feel much better, the realities of needing a drug that costs $30,000 Canadian per year do change your available life choices.

I can't ever work at a job that does not have benefits. I must always work the required number of hours to retain benefits.

I can't ever pick up and move some place unless I know I will have a job with benefits or that the province I move to has catastophic medicine coverage( and not all provinces do)

I can travel - but must do it in 8 week intervals( assuming I am still on Remicade when I retire)

I also would be too scared to go off of the Remicade until it stops working for me as I was so sick and in so much pain before that. The daily pain, chronic constipation and stress was much more of a hassle in my life than taking the Remicade is.