I feel good. Do I really need Remicade?

[MaryEllen]

To go on Remicade or not. I have Crohn's (diagnosed in 1983) but have been very fortunate through the years with minimal flare ups until the past few years in which I have had numerous flare ups. I also developed a fistula which indicates advance stage of Crohn's. I am on Pentasa and things are calm and have been for a few months. I have been on Remicade before but stopped it once I started feeling better. I feel really good right now. Not having symptoms other than fatigue and occasional loose stool. It is being suggested that Remicade is needed and for the rest of my life. I do not want to put any more drugs in my body especially when I am feeling good right now. I see the stories on here and how much worse Crohn's can get so I am wondering if I should hold off or go ahead and start it up again. If you have been on Remicade for a while, what kind of relief are you getting and do you have to be on it for the rest of your life? I am curious of the long term effects. I am 48 years old and feel I am still relatively young so I don't want to start something unless I absolutely have too. Thank you for any feed back you may wish to share with me.

 

[ryansbronco]

I had to go off remicade for about 6 months, due to funding, then I crashed.
My GI says that he has a few patients that were on remicade for years and have been able to walk a way. For me I'll be a lifer.

 

[SarahBear]

Welcome to the forum, MaryEllen!

I'm glad to hear you're feeling well!

Have you been on any other medications for your Crohn's? If not, is there a reason why your doctor is pushing Remicade specifically?

It's really up to you whether or not you want to go on it. Personally, I wouldn't want to stay only on Pentasa, as it's a very weak medication as far as Crohn's is concerned, and often ineffective. It's great that you're feeling well now, but pushing a stronger medication would be to keep it that way and prevent future flares and damage to your body. Are methotrexate and 6-MP / Imuran options for you? I would personally prefer to start there rather than jumping straight into Remicade.

Why are they insisting you would need to stay on Remicade permanently? In some cases, it may be an option to decrease or stop medication after remission is achieved and work to maintain remission through diet and other lifestyle changes. However, I would definitely make sure to achieve remission before going off medication.

I personally have not been on Remicade myself, but I see that you've found our Remicade support group, where you'll be able to hear from others who have.

 

[bornjul]

I was introduced to Remicade about 12 years ago. I had the infusion and within a week had completely turned around. Unfortunately, it was a fairly new drug and they didn't understand I should have infusions every 2 months. The next time I was infused was 6years later. My body had built immunity against the Remicade and I ended up in the emergency room one week later with an allergic reaction. I started freezing up on the right side of my body starting with a tingling in my toes. Over the next 2 hours it progressed up the right side and across my shoulders to the left side. Luckily, the ER doctor was able to help with some of the dreaded prednisone and with a few hours I was okay. I really wish they had better understood this drug because it worked so well for me. Currently, I am taking Humira and after a year I feel it is no longer working. Not sure what my options are now. I have had Crohn's for 25 years.

 

[MaryEllen]

bornjul - sorry to hear the Humira didn't work for you. It didn't work for me either. In fact, it made me much worse. I hope you can find something soon to bring you relief so you feel better.

 

[MaryEllen]

Thank you!

SarahBear - Thank you. It took me a long time to join but I am here now.

I have been on other meds. Many of them. Because of my fistula, they say I need biologics. I have had success on the Remicade and have not developed antibodies to it.

I realize it is my decision. My gut says to wait until I absolutely need it because I do seem to tolerate the Remicade very well.

Pentasa is a weak medicine but I begged to be put back on it because it is the only thing that keeps my bowels solid.

I hear of people going into remission and coming off the Remicade but two doctors now say I would be a lifer because my fistula indicates advance stages of Crohn's. But again, I see these forums and the stories and I consider myself very lucky. I will continue my research and gathering as much info as possible to help me make my decision. Thank you so much for your reply!