Crohn's Disease Forum » Treatment » Remicade/Infliximab » remission and concerns about Remicade


01-19-2018, 10:08 PM   #1
kap
 
Join Date: Jan 2018
Location: Houston, Texas
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
01-19-2018, 11:16 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hi. I would talk to your doctor. Tell him what is going on and the possibility of going yo another biologic.
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
01-20-2018, 08:55 AM   #3
Sophabulous
Senior Member
 
Sophabulous's Avatar
 
Join Date: Jun 2016
Location: Cheshire, United Kingdom

My Support Groups:
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 Iím on Azathioprine (which I believe is Imuran across the pond) but it hasnít 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 Iím 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.

Thatís the plan anyway, Azathioprine wasnít 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.

Iím aware there are huge ideological differences between the UK & US when it comes to healthcare, and this way of doing things doesnít always work out but I guess thatís just the price we pay for universal (and right now chronically underfunded) healthcare.

It doesnít sound as though you are talking about going off meds completely which I donít 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 :-)
__________________
Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
01-20-2018, 09:04 AM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
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 Iím on Azathioprine (which I believe is Imuran across the pond) but it hasnít 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 Iím 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.

Thatís the plan anyway, Azathioprine wasnít 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.

Iím aware there are huge ideological differences between the UK & US when it comes to healthcare, and this way of doing things doesnít always work out but I guess thatís just the price we pay for universal (and right now chronically underfunded) healthcare.

It doesnít sound as though you are talking about going off meds completely which I donít 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 :-)
Wish you the best

Reply

Crohn's Disease Forum » Treatment » Remicade/Infliximab » remission and concerns about Remicade
Thread Tools


All times are GMT -5. The time now is 03:56 AM.
Copyright 2006-2017 Crohnsforum.com