Crohn's in remission, reducing and stepping down meds

[Hairyclarey]

Hi, I'm after advice on reducing my meds as I've been in remission for 2 years.
I'm currently on Remsima, I've been on it every 6 weeks for 5 1/2 years and have just changed to every 8 weeks. My ibd nurse has talked about getting me off Remsima and onto a tablet instead - maybe azathioprine. I tried azathioprine when I was in hospital once and I reacted really badly so may have to try other tablets first.
I'm just wondering if other people have done this, and I'm obviously worried that if I change anything I could go downhill.
I have changed my diet and stress levels greatly since being diagnosed 7 years ago so I'm doing all I can, however I a know my feeling well could totally be down to the Remsima. Thanks x

 

[Lady Organic]

Hi and welcome to the community.
Usually, when a treatment is working you keep it. Stopping medication involves important risks of relapse and even risks of treatment failure if its restarted.
Returning to Aza seems not a good idea at all since you already reacted ''really badly'' to it.
If your disease was moderate to severe, needing Infliximab (Remsima), I would really encourage to stick to it. This is your safest bet.
wishing you well.

 

[Hairyclarey]

Thank you. I guess it's a big and scary step to take. I'll see what my consultant says and do my research. X

 

[Lady Organic]

If you are from the UK, I have read in the forum that people in the UK may have a hard time staying long term on Biologics like Remicade (Remsisa) due to the very expensive cost of the medication for the insurances. In North America, common practice would not want take someone off such a medication if it was working for a patient with moderate to severe CD, especially if an immunomulator like Aza has been a failure previously. I encourage you to fight for it as long as it is keeping you healthy. Our options are very limited in terms of treatments and every year of healthy status does matter very much and must be cherished! good luck.

 

[Cross-stitch gal]

A long time ago when I was in remission I got totally off my medication and did fine for awhile. But, there's no way I do it now and no way I'd advise it for anyone else. I agree that if a good thing is working why mess with it.

I'll admit to trying something else though. My medication recently went generic and I got a little to try to see since it's less expensive. Mine did work and I stayed in remission. But, I also kept with my doctor and he only gave me a month's worth just in case it didn't work for me.

If you do decide to try something else, I'd be very careful! Especially if the stuff is the kind you've tried before and didn't work at that time. Please, keep us updated.

 

[Ricky_V]

Agree with Lady Organic, Getting into remission allows you to buy time and have a life until new drugs or a cure is developed. If you are lucky enough to be in remission don't change things until you have to.