Starting Remicade Soon

[danielle.wilson411]

Hi everyone,

I had an appointment with my GI on Friday and we discussed future medications. I am currently on Pentasa and tapering off of Prednisone but he gave me either the option to give it time and see if the Pentasa works or go straight to a biologic or 6MP and the other middle tier drugs. He knows my urgency for starting a family so I told him because of the severity of my disease I didn't feel that Pentasa would necessarily work and that the middle tier drugs can take months to set in. He said that since I am wanting to get pregnant he would recommend going straight for the biologics and if his wife was sitting in the room with the same situation he would recommend the same thing. So that is where we are today....going to start Remicade once all the paperwork is in. Filled out the paperwork for Remistart so just waiting on that before they do my first infusion. My question for people on Remicade is what can I expect after my first time? I know each person can react differently but did you feel a certain way afterwards (ie sore or tired)? I am honestly scared to start this process since I am actually feeling quite well right now but I know that I need to get off of the steroids and this seems to be the best option to hopefully keep me in remission.

 

[JaimeM]

YAY! I'm so excited that you're going on Remicade! I love Remicade tbh. I've been sick for awhile bc I went off my Remicade(Not sure if you remember my story from our other posts) Anyway I was on it for 6 years and did great then went off after my son was born to do Cimzia. Big mistake for me.. Anyway, I've been sick for a year and just recently started Remicade(with imuran as a side kick) I'm already feeling a little better, I have my second dose this friday.

Each infusion takes anywhere from 3-4 hours of total time being there. Bring some headphones and some music, I always like to take a good nap. I'll bring a book and my ipad to watch a movie until I get tired. They usually give you benadryl beforehand (I also get tylenol and solumedrol before) So that makes you sleepy. I get really tired for the rest of the day. I always do my remicade on fridays, that way I can sleep all day friday and part of saturday if I need to. I don't usually get too sore, I used to get a bad headache saturday night but that's about it. Also make sure you really hydrate well that week and the few days after.. It helps the nurses get an IV easier and I always seem to do better when I'm not dehydrated.. Good luck! Also check into the Remistart program. It will cover the cost of the drug for a certain amount a year.. My last Remicade cost my insurance 11,000. So it is expensive just a heads up.. But no different than most of the biologics.. Definitely google the remistart program and get signed up tho.

 

[danielle.wilson411]

Thanks JaimeM! It's great to hear your story. I do remember you from past posts. You answered questions I had about getting pregnant too The doctor mentioned Cimzia but said that there isn't much research about it since Remicade and Humira mainly have the market as he put it. I really hope it works for me the same way the steroids have. Luckily for me I get to do my infusions right down the road from where I work so my plan is to hopefully leave work early and then go straight home. I will keep in mind doing it on a Friday too especially until I can figure out what type of reactions I will have. Were you able to get yourself home or did you have to have a driver since they gave you Benadryl?

 

[JaimeM]

I drove every time. I actually used to drive 70 miles to get home, and it probably wasn't safe but I did it.. I started doing it at the hospital I work at now, so it's a few blocks from home.. Nice and easy.

 

[Khaley]

I've been on Remicade for two years now. The Benadryl used to make me fall asleep but I don't premeditated anymore. Still, just laying there for 3-4 hours can make me sleepy. I take a book or watch a movie on my iPad. It may sound funny but I actually kind of look forward to my infusions for the downtime. I don't notice any effects from the Remicade itself.

I've been on azathioprine for eight years but had never really felt I was in remission and ended up in resection surgery a year and a half ago. I feel so normal now that most of the time I can almost forget I have Crohn's. I believe the Remicade is keeping me well. Good luck to you! I hope you have good results with it, too!

 

[danielle.wilson411]

I have my first infusion on the 27th (which of course is a Wednesday) but I took the rest of the day off of work and know that if I need to take the rest of the week off because of how my body reacts then they will be fine with that too. I am hoping it helps me as much as it has helped you guys! I wish it was a little sooner just because I feel like I may be going back into a flare but at least I have plenty of prednisone at home to get me thru the next few weeks.

 

[ronroush7]

I am no longer on it but they would giveme benadryl and Tylenol before hand and I would be sleepy do it is good to take the rest of the day off.

 

[JaimeM]

Good luck! I had my remicade today. Slept thru most of it. But it's been a long week at work so the extra sleep was nice. Hoping your first one goes great!

 

[Justanothercp]

I've been on Remicade for over 10 yrs. I premedicate with Tylenol and Loratidine (it doesn't cause drowsiness like Benadryl) an hr before my appt. I'm now down to a 2 hr infusion, if you do fine with it, they can increase the speed of delivery over time. Thankfully, I've never had an issue and it has helped me stay in a fairly steady place.
Good luck.