Scared of Remicade and starting soon.

[Tj7627]

I was diagnosed recently with crohns disease. I have perianal disease, have had a fistula since February, and my Dr put me on azathioprin with the intention of putting me on remicade soon after. This terrified me because im a 25 year old male and the thought of T-cell lymphoma scares me to death.

My Dr addressed my concerns and changed me to Methotrexate 12.5 mg. My concern with the remicade is that I was on azathioprine for only 14 days, but I have read and was told by my doc that it can take between 3-5 months to get out of your system and she wasn't sure if it would still put me at risk of T-cell.

I know a few people who have taken Remicade and they have been on it for a while now, but the thought of the drug scares the crap out of me. There are a huge amount of side effects and im scared something life tthreatening may happen to me and ill miss out on a future with my fiance, who has been amazing through this whole crohns situation.

How long have some of you been on remicade and have you ever known or heard of somone, outside of the internet, who developed cancer from remicade?

 

[cosmic dave]

Im starting this soon and its normal to be worried but you will be monitored. Im more worried about long term inflammation and the cancer risks that brings myself thats why im looking forward to trying this treatment and hopefully getting well.

2

 

[staloffn]

I had a fistula that would keep getting infected from 2000 till diagnosed in 01. was onn flagyl for about 4 yrs and it never really helped much. did the oral immunosuppresants imuran(allergic to) metho, started remicade in 05. the first few doses were rough and i was concerned/scared and all that. seriously stressed out about the whole thing. about 8 months after the fistula was gone, a total non issue and my other symptoms were pretty much gone too. i felt great for about 7 yrs on it. i could do anything and really gave me my life back in so many was. it is scary but the reward for me in hindsight was more then worth it. everyone has a different experience with it. it has not been working anymore for me the last 6 months now and my only regret is i took some of those healthy years for granted. now the fistula is coming back and abscessing and i vividly remember just how terrible it was.
i'd say don't worry about it but it is scary. for me i have really come to a place where quality of life is more important then quantity. i think i'll be switching to humira soon and hope it gives me back what the remicade did so well. overall i had a great experience with it and would recommend it highly.

 

[alisonwilkinson]

Hi I started Remicade Friday just gone. I strongly recommend the drug. I was very nervous about going on the drug but already am feeling a lot better after just one infusion. My toilet habits are already down to one a day. I am very optimistic about Remicade. Hope this helps.

Alison

 

[AlliRuns]

To be clear, Remicade doesn't have so many side effects as it has Risks. I have had almost no side effects aside from some wicked dry skin and hives after infusion number 2 (no hives since). I don't personally know anyone else on Remicade aside from the people I have met at the clinic, so don't know anyone who has developed lymphoma.

 

[ryansbronco]

Im on reimcade and take the premeds and solumedrol. So for no side effect.
Ive read where the is a chance of lymphoma. Just keep in mind the odds are you will not get anything major. The drug makers have to list any type of side effects. Your GI will be taking labs and keeping an eye on you. The IC nurse team will give you a number to call if you think you are having a reaction

 

[purdueCrohns]

The Lymphoma Risk - Flaring Crohn's is a health risk. Being in a flare increases your chance of colon cancer. The increased cancer risk in Remicade is very low. It could be lower than being "flared."

Since you are 25, you are actually at MUCH lower risk. The lymphoma seems to be primarily affecting younger people.

One other thing, you are not on Imuran or 6MP. The warning given by the FDA specifically called out those medications being paired with remicade