My first Remicade treatment

[SoOoO CoNfuSeD]

So i went for my first ever infusion yesterday. I have to mention again, that it was not a decision i took lightly. The long term effects, though statistically unlikely, really scare me. Ultimately my decision came down to the fact that i'm fed up of feeling like crap and chose a better quality of life, for right now. Sooo, i did not sleep at all the night before, which was driving me insane because i really wanted to be in the best shape possible going in there. Arriving at the clinic i was comforted by the fact that it was really not at all a hospital setting. It was a very relax setting, with tv, dvds, wifi. After hooking me up and beginning, all was going really well. Eventually two other patients my age arrived for their treatments as well. It was really comforting to talk to them as they both had been on Remicade for over 5 years and both were in remission. They both seemed to look forward to their treatments because it was a wind-down time for them. They both had tylenol and benedryl with theirs. My doctor didn't prescribe anything else for me. I'm kind of glad. I'm so fed of taking pills, that if i don't need them, i'd rather not. The nurse monitored my pressure every 15 minutes and then 30 minutes in the second hour. After about 45 minutes i began feeling a little queazy and my heart began beating really fast. I don't know if the queasiness is due to the medicine, but my heart beating was probably due to anxiety.. I'm an over-thinker and tend to freak myself out sometimes. I told the nurse right away, and she just told me it was probably due to stress and fatigue, she suggested i really let myself go and relax. A couple of minutes later, i was fine. Right after, i felt like a million bucks, and dared to go eat a really rich meal at the resto. BIG mistake. I have no idea whether the remicade had anything to do with it, but i had not had a flare up like that in at least a year. Major cramping and visited the washroom 4 times in the span of an hour. And then, probably due to both the remicade and the false up, i was really drowsy and sleepy, so i just slept it off. This morning i feel ok. Defintely weak, but ok. No abdominal pain or anything. Have another Remicade infusion in 2 weeks, looking forward to seeing how this is all gonna play out.

 

[D Bergy]

I have never been on Remicade, but I know what you mean about the possible side effects making it difficult to look forward to taking a medication.

If I ever have a problem with food, it often is restaurant food. It is richer and often difficult to digest for some reason. Luckily, I can eat about anything without much trouble.

I hope the Remicade brings you a better quality of life. That is what we are after until this disease can be cured.

Keep us posted.

Dan

 

[gingerbr]

I started Remicade in September, I was also very scared and worried but I was at the point where nothing else was helping and I was so sick and tired of not having a life. So far Remicade has been GREAT for me, 7 days after my first treatment I had a normal bowel movement (which was the first in at least 5 years). I hope it works just as well for you!

 

[Jennifer]

Hi SoOoO CoNfuSeD!

The IV gradually speeds up towards the end of the infusion so that could be why your heart started racing a bit. I know for me I could feel it making me tired which concerned me and made my blood pressure go up (not from the medication but from my own concern). The nurse told me that Remicade does make some people sleepy (we were given a non drowsy antihistamine). The day of and the days following I also had diarrhea which eventually went away. I didn't even have diarrhea before the infusion so I'm sure its from the medication.

I also couldn't sleep the night before. Its hard not to be nervous over something new and possibly scary. I also calmed down by getting a chance to talk to other people around me and having a nurse there constantly made me feel better.

When's your next infusion? Mine second one is this Wednesday.

 

[rkoll327]

So i went for my first ever infusion yesterday. I have to mention again, that it was not a decision i took lightly. The long term effects, though statistically unlikely, really scare me. Ultimately my decision came down to the fact that i'm fed up of feeling like crap and chose a better quality of life, for right now. Sooo, i did not sleep at all the night before, which was driving me insane because i really wanted to be in the best shape possible going in there. Arriving at the clinic i was comforted by the fact that it was really not at all a hospital setting. It was a very relax setting, with tv, dvds, wifi. After hooking me up and beginning, all was going really well. Eventually two other patients my age arrived for their treatments as well. It was really comforting to talk to them as they both had been on Remicade for over 5 years and both were in remission. They both seemed to look forward to their treatments because it was a wind-down time for them. They both had tylenol and benedryl with theirs. My doctor didn't prescribe anything else for me. I'm kind of glad. I'm so fed of taking pills, that if i don't need them, i'd rather not. The nurse monitored my pressure every 15 minutes and then 30 minutes in the second hour. After about 45 minutes i began feeling a little queazy and my heart began beating really fast. I don't know if the queasiness is due to the medicine, but my heart beating was probably due to anxiety.. I'm an over-thinker and tend to freak myself out sometimes. I told the nurse right away, and she just told me it was probably due to stress and fatigue, she suggested i really let myself go and relax. A couple of minutes later, i was fine. Right after, i felt like a million bucks, and dared to go eat a really rich meal at the resto. BIG mistake. I have no idea whether the remicade had anything to do with it, but i had not had a flare up like that in at least a year. Major cramping and visited the washroom 4 times in the span of an hour. And then, probably due to both the remicade and the false up, i was really drowsy and sleepy, so i just slept it off. This morning i feel ok. Defintely weak, but ok. No abdominal pain or anything. Have another Remicade infusion in 2 weeks, looking forward to seeing how this is all gonna play out.

Oh yikes! Having a flare up that bad is never a good thing. I was on Remicade for a while, and it really did well for me. The only reason I got off was because the infusions were inconvenient timing wise with my class schedule at school. Other than that it was great. Don't get yourself worked up and expect every time you have an infusion you are going to have a flare up. Having a super big meal for any of us can usually trigger some sort of unwanted reaction in the gut, but couple that with your nerves and anxiety of your first infusion, and all those new meds flowing through your body at the same time and it's bound to be bad. Just try and relax next time you go. I know you don't want to take any extra pills but maybe ask if you can have some benadryl, I had to take it in case of allergic reaction but it used to make me nice and drowsy. I would put my headphones in and pass out for the whole infusion. It was actually super relaxing and something I looked forward to haha! If you don't want to go the sleeping route try a book or a magazine, whatever you can to keep your mind off of it an occupy your time. Some anxiety is expected, and totally normal. The decision to start a new medication is a big deal for us crohnie's. Don't worry though! It will all work out

 

[SoOoO CoNfuSeD]

Thanks for the advice and support guys! Really means a lot. Crabby - seems like we had a similar first infusion experience. I gotta just learn to calm down. My next infusion is next Feb. 11th. And ya... i'm really working on my outlook about it all. My priority right now is to feel ok... gotta stop letting that be over shadowed with my one million fears. Woke up this morning without any abdominal pains! that was great and enough to give me hope. Keeping the faith. I haven't really had any bowel movements yet, since my flare up. I"ve been sticking to mostly liquids, i guess time will tell.

 

[AlliRuns]

My bp/hr were really high (for me) when I went in (was really nervous), my bp went up to 117/78 and hr was almost 90. I calmed down after I realized nothing bad was going to happen and my bp remained a steady 90/50 and hr 52 for the remainder of the drip.

 

[SoOoO CoNfuSeD]

Had my second infusion last night. Feeling pretty good today. I was much calmer, more relaxed (actually got some sleep the night before this time) and went pretty well. I don't get any benadryl or anything before and i actually get a little sleepy during the treatment. Felt fine afterwards too... just really groggy, so i relaxed in front of the tv and called it an early night, only to wake up feeling pretty good. It's really something to take in a deep first breath in the morning and not feel stomach pains while inhaling. I've also been juicing a lot and doing yoga and watching what i eat. I feel like i'm on the right track here. Please feel free to share your stories about your first couple of remicade treatments.

 

[AlliRuns]

I had my second one on Thursday. I still felt groggy afterwards, but not as tired the next day as I did after the first one. As a bonus, I didn't faint when I got my IV for the second one

 

[SoOoO CoNfuSeD]

Good stuff... i guess it's something that we'll eventually get use to. How are your Crohn's symptoms since?

 

[AlliRuns]

My symptoms are mostly fistulas, haven't noticed much change yet. My doc said to be patient because it takes longer with those sorts of things.