remission and concerns about Remicade

I was diagnosed with Crohn's when I was 12. When I was diagnosed, the disease had progressed to the point that my stomach was bleeding severely and I was extremely underweight. Upon diagnosing me with Crohn's, my pediatric GI immediately put me on Remicade.

Remicade worked wonders for me. It took a few years but ultimately I made a complete recovery. I have had a few complications over the years with kidney stones and joint pain, but my digestive issues have been kept relatively in check.

Now, 8 years later, I am a college student and I still manage Crohn's with Remicade infusions every 8 weeks. I understand that I am extremely fortunate to have made a recovery and to be able to live a full, normal life. However, I am worried that continuing to use Remicade could be detrimental to my long term health.

My biggest issue with Remicade is that I am sick all the time. I have had a cough for several months that I havent been able to shake despite being on antibiotics. Upon my most recent visit to my school's health center about this cough, I tested positive for mono. As a college student on Remicade I find that I am always sick with something. It is extremely taxing on my body and I am worried about the long term consequences.

Additionally, my mom has ulcertive colitis which she treats with Remicade. After a few years of successful treatment, she began to develop an MS like disorder, which she insists came from the drug. Obviously, MS is the last thing I want to get from my Crohn's disease treatment.

Now I am unsure what to do. I feel defeated always being sick, but I don't want a resurgeonce of Crohn's disease. Has anyone had success stopping Remicade treatment and moving toward a long term dietary/ lifestyle treatment? I am open to making whatever changes I need to. After coming so far, I don't want Remicade to be the thing that brings me back down again

Hi. I would talk to your doctor. Tell him what is going on and the possibility of going yo another biologic.

Hi there! I know things are different over here in the UK (for better or worse) but on the NHS they try to give biologics for the shortest time possible and then once in remission they try to withdraw onto a less severe maintenance drug. For example I’m on Azathioprine (which I believe is Imuran across the pond) but it hasn’t improved things for me and my scopes still look pretty bad. I will be starting Remicade myself soon, and then hopefully once things are under control I can wean back down to Azathioprine. Once I’m actually in remission, this should be enough to keep it that way. If I need to go back on to Remicade again in future then the door is always open for that if need be.

That’s the plan anyway, Azathioprine wasn’t enough to curb what was going on with me before, but once things are settled down it should just prevent me from getting to be as bad as I was again.

I’m aware there are huge ideological differences between the UK & US when it comes to healthcare, and this way of doing things doesn’t always work out but I guess that’s just the price we pay for universal (and right now chronically underfunded) healthcare.

It doesn’t sound as though you are talking about going off meds completely which I don’t think would be a good idea, but an honest discussion with your doctor should reveal what options you have and what the best approach for you personally would be. If your treatment regimen has done its job and got you into remission but the side effects are becoming a problem then at the very least your doctor can have a chat with you and you can both put your cards on the table.

Let us know how you get on!

Best of luck

Sophabulous said:

Hi there! I know things are different over here in the UK (for better or worse) but on the NHS they try to give biologics for the shortest time possible and then once in remission they try to withdraw onto a less severe maintenance drug. For example I’m on Azathioprine (which I believe is Imuran across the pond) but it hasn’t improved things for me and my scopes still look pretty bad. I will be starting Remicade myself soon, and then hopefully once things are under control I can wean back down to Azathioprine. Once I’m actually in remission, this should be enough to keep it that way. If I need to go back on to Remicade again in future then the door is always open for that if need be.

That’s the plan anyway, Azathioprine wasn’t enough to curb what was going on with me before, but once things are settled down it should just prevent me from getting to be as bad as I was again.

I’m aware there are huge ideological differences between the UK & US when it comes to healthcare, and this way of doing things doesn’t always work out but I guess that’s just the price we pay for universal (and right now chronically underfunded) healthcare.

It doesn’t sound as though you are talking about going off meds completely which I don’t think would be a good idea, but an honest discussion with your doctor should reveal what options you have and what the best approach for you personally would be. If your treatment regimen has done its job and got you into remission but the side effects are becoming a problem then at the very least your doctor can have a chat with you and you can both put your cards on the table.

Let us know how you get on!

Best of luck

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Wish you the best