Remicade and risk of lymphoma

[Sparky]

I know there are loads of threads about Remicade, and I've been reading tonight but still cannot pin down answers to my questions - so please forgive me starting yet another thread about it?

OK - I'm more than 2 months into Imuran (which worked extremely well for me a few years ago), and I'm going downhill, not up. Severe gut pain and D, can't eat for the last 48 hours, massive upswing in joint pain - I'm back into a full-on flare.

I have the offer of Remicade on the table - funding's been agreed, my lovely consultant is just waiting for me to say the word and he'll schedule it.

Thing is...I'm a bit scared. I know lots of you are on it, but I'm worried about the secondary infections and possible risk of lymphoma mostly.

Is anyone able to reassure me, or give me a hugely positive story about Remicade to help me decide? My other option is to increase my dose of Imuran, start on entocort again and hope that does the job. Any thoughts would be welcome.

 

[imisspopcorn]

Hi,
I have only had 2 doses so far. I can't really say anything positive or negative yet. I was in your situation last year and waited too long to start the Remicade. I was becoming obstructed and ended needing surgery. This time around I'm not waiting. My only advice is not to wait too long.

 

[cheeky]

i'm nervous about remicade too... i'm just wrapping up the final paper work and then i should be scheduled for my first remi dose very soon.

i haven't read much about remicade at all....

maybe a dumb question, but does it hurt? how long is the procedure for each dose?

 

[katiesue1506]

Nope, its just an IV line... the only part you feel is the part where they have to stick the IV in you.

It used to take me about 3-4 hours for an infusion. Ran into complications a couple times and they took 5 hours then. I know people who tolerate it well can get their infusion times down to 2-2.5 hours but thats without any pretreats (Tylenol and Benedryl).

They used to give me my pretreats and then run saline in my arm for 30 minutes to allow the pretreats time to work. They they would start the Remi drip and it would start really low and then ramp up to 250 cc an hour over the course of two hours. Then they would run another 30 minutes of saline to clear the line and watch me for any side effects. Therefore a good Remi infusion took 3 hours.

 

[GI Joe]

I have had great results on Remicade. I believe the rewards outweigh the risks. My infusions usually take about 3 hours from arrival to leaving but sometimes a little longer waiting on the pharmacy to get it ready. I don't get any pre or post treatments but I have never had any reactions but they always have Benadryl standing by just in case I ever do. I have never had an infection. I am working in a hospital right now and spend time in other high germy areas such as the gym. I don't really worry about catching an infection but I know we all will catch a cold or the flu from time to time. I just take the usual precautions like frequently washing my hands, keeping my hands away from my face/mouth and use hand sanitizer frequently. Remicade had really worked for me, I wish I had started it years earlier.

 

[Becky]

I have been on remicade for just over 2 yrs and think it is great. I agree that the rewards outweigh the risks. MIne are the same as Shantel-abou t20 min to get it from pharmacy and 2.5 hrs to admin. I do not have to wait afterwards.

Shantel- I enjoy mine too! I also watch a movie or take a nap.!

 

[Sparky]

Shantel, those stats are really helpful, and put it into perspective - I thought the increased risk was way higher than that. Stupid to be so anxious about it - when I started Imuran the first time 4 years ago I never even thought about the 'big' possible side effects - I just took it. It's reassuring to know that Remi isn't going to monstrously increase what I'm already dealing with.

I think the reason I'm twitchy about infection is because I have a 10 year old boy and all his grubby little friends - although my boy is very good about handwashing (we're all a touch obsessive about it, same with doing laundry). I've never had an infection other than minor skin stuff whilst on Imuran, so not sure why I'm fretting now.

Feeling slightly better today after a break from solid food - had a slice of toast this afternoon and apart from slight grumbling it's been fine, which is a very good sign!

Still hoping that Imuran will do the trick tbh, it worked so well for me last time that maybe a dose adjustment is all that's necessary?

Thanks for your thoughts all, much appreciated

 

[cheeky]

oh man i'm so scared. i have tiny veins apparently, and when i was in the hospital, the IV insertion hurt me (and left marks on my skin, which i still have)... ALSO, something HORRIBLE happened when they put the CTscan injection through to my veins.... i SCREAMED in pain... they said it's because my veins are small and the rate at which the injection ink was going caused that reaction. never felt pain like that before, but i suppose it was because my veins were going through a lot, having been on iv for a few days and blood withdrawn daily... so that hospital experience has made me scared of IV's.

geez HOURS??? gawd i feel nervous. i wish i didn't have to do it.

 

[katiesue1506]

Just make sure you drink lots of water beforehand and it will help your tiny veins out a little bit

 

[cheeky]

awesome... thanks for the tips katiesue and shantel. this is good info.