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Had my first Remicade infusion...have questions

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Ulcerative Colitis
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Posted 5/4/2009 12:04 PM (GMT 0)
Hi everyone,

I had my first Remicade infusion last tuesday the 28th of April.  The infusion went ok, received benedryl and tylenol while getting infused.  I went home that day and slept a lot, due to meds given.  THe next day I felt ok, just a tad tired.  Then...the Thursday, Friday and Saturday after..I had a strange headache (not one I could get rid of and had ever experienced again) and felt like someone was hanging on my arms and legs, I was exhausted and weak almost flulike.  I slept those 3 days a lot and didnt even feel comfortable driving.  I was writing it off to seasonal allergies and that was it but never felt this bad before from them.  But the  more I thought about it, I called my GI doc and the nurse said it probably was not the Remicade causing these problems since they usually are within the first day of infusion.  I starting feeling good again on Sunday and back to my normal energy level.

I guess my question is...has anyone else experienced these effects from Remicade???  I just find it odd that I felt this way after infusion and never had felt like this before. 

Thanks for your input,

Amy

Posted 5/4/2009 12:34 PM (GMT 0)
Hi Amy,

I have not personally felt like that. But I know of someone that gets Remicade infusions for Rhumadiod (sp?) arthritis, and she says she sometimes experiences flu-like symptoms for a couple days afterwards. If I were you, I'd track it and see what happens after the next infusion and as always, keep your doc in the loop.

Good luck!
Posted 5/4/2009 1:06 PM (GMT 0)
The whole experience is tiring, and once my daughter stayed home from school on the second day after the infusion, due to fatigue. Your experiences seem pretty normal. Keep paying attention though. Everyone is different, as you know.
K
Posted 5/4/2009 1:29 PM (GMT 0)
Keep an eye on those symptoms. Also, I used to take the Benedryl but it wore me out; I was too tired to drive and when I got home I went straight to bed. Now I take a Claritin or Zyrtec (actually it's Loratadine) and feel just fine after my infusion. Remember though, it might take your body some time to adjust to the new med.

Posted 5/4/2009 1:40 PM (GMT 0)
I was going to make the same suggestion Carol did. I always take a Zyrtec before I go in; that way they can't give me Benadryl, which absolutely sedates me.
Posted 5/4/2009 2:27 PM (GMT 0)
Thank you everyone for your input.  I just was nervous that I felt so off for so long afterwards.  I go again net week, I will be sure to tell the nurse and see if the same thing happens again.  I hope I adjust and it works out for me!!!  It took a lot of courage to start Remicade for me.

Thanks again!

Amy

Posted 5/4/2009 3:44 PM (GMT 0)
I'm always completely exhausted after my Remicade and continue to be that way for about a week. 

Posted 5/4/2009 3:44 PM (GMT 0)

I have been getting Remicade infusions for 4 years.  I plan them for Fridays because the next day or two I am totally wiped out.  I get extra Benedryl because I have a reaction each time.  I am barely able to drive home then go to sleep for the night.  Saturday and Sunday I need some naps and quiet time.  Even the following week my stomach is upset and I have flushing and a headache.  I have to take Solumedrol, 75 mg of Benedryl, 2 Tylenol and 2 Zantek, Venofer and B12.  This happens every 4 weeks.  I try to look at it as I have a relaxing weekend every 4 weeks... I try not to stress.  Usually by the afternoon on Sunday I am feeling better and can go out.  All in all, the Remicade is worth the side effects.

Posted 5/4/2009 4:41 PM (GMT 0)
Nor_Tx....

Thanks for your input.  I was on venofer for a while too, due to anemia.  They had to stop due to my veins being to hard to get. Last time I had a hematocrit it was normal so I was happy.  I go again this week for bloodwork to see how I my blood counts are.  Its amazing how that alone will make you tired.  I noticed as well that my reflux and stomach have been upset more than normal but assumed it was stress or something else.  I wondered if it could be related to remicade but was not sure.  Its crazy how we are all so different and have different side effects. 

I would say the worst for me is the fatigue and headache.  I hope that is the worst of it since that was only after my first infusion.  I am still on prednisone and do take meds for reflux but do not take additional allergy medication after the day of infusion.  I am so sensitive to benedryl and all other allergy meds.  They all make me tired!  LOL  I take ativan for anxiety, which I have noticed is worse since I had infusion too! UGH...I hope this infusion works because it is difficult to deal with the side effects otherwise. 

Thanks again for telling me of your experience with Remicade.  It helps to hear about others experiences with it.

Take care

 

Posted 5/6/2009 12:55 AM (GMT 0)

I have been on Remicade for 2 years and 4 months.  I just had an infusion today and I have a headache now.  I get Benedryl and Sol u medrol before my infusion.  I also am very tired, but i have two kids so it is hard to rest.  Anyway, Remi has worked for me, but at this time I am having some symptoms.  I am a little afraid to call my doctor.  I don't want to hear what is next!!!  I am just tired of it all.

Ulcerative Colitis 17 years

Azathioprine 4 a day

Asacol 8 a day

Effexor

Good Luck

Posted 5/6/2009 1:49 AM (GMT 0)
Guess I've been lucky, I feel great after the infusions, just go about my business for the rest of the day. Fortunately I haven't needed Benedryl or anything else with the Remi, so I guess that's why. I go every six weeks.
Posted 5/6/2009 2:07 AM (GMT 0)
I had my first infusion a couple of Fridays ago and I was whiped out after the infusion and once I got home I basically slept the rest of the day away... I shouldn't have drove home from the infusion, I stopped off at my Parents' and I walked into a door (that was closed) because I was so groggy from the Benadryl. The next morning I was full of energy and felt like a new person; yard work from dawn to dusk....loved it and I felt great.

48 hours after the infusion I was still full of energy and my UC was almost in remission... It's been all downhill since and my flare has gotten worse (not too concerned about it). I have my 2nd infusion this Friday.

My GI said that I should see results in about 2 months so I was extremely happy after my first infusion with such great results and I'm looking forward to this Friday's infusion.

The only reaction that I noticed was that my arm felt a little numb for 48 hours or so but it was a very slight numb-ness.

--Keith
Posted 5/6/2009 2:13 AM (GMT 0)
I've had only two infusions, and the second time they did not bother with the Benedryl, because I showed no signs of allergy (they said it's meant to preempt symptoms of allergy). Both times I've had no problem being able to work the rest of the day.

I felt some tiredness in the days following, and had some unusual headaches (that I blamed on other stresses), but nothing that could not be managed with a little nap or some tylenol.

Allergies have been bad this year!
Posted 5/6/2009 3:20 AM (GMT 0)
Wow, thanks everyone for sharing your remicade stories.  I can say today I actually feel better.  I had really bad gas pain etc (you can figure the rest out) lol  for the past few days too so I increased my prednisone to 10mg from 7.5mg yesterday.  Since then I seem to be somewhat better.  I just think that the side effects I experienced were the way my body decided to deal with it.  I think the fatigue and headache were the worst but maybe next time I will not get that bad.  I guess I was looking forward to relief and not feeling worse afterwards but I have to patient.  Not my forte!  lol

Keith...let me know how your second infusion goes...mine is next week on Wednesday.  I am nervous but am looking forward to no flares someday soon.  I considered myself in remission or close to it prior to my first infusion so I guess I was a bit discouraged that I actually felt worse than I had before infusion.  Oh well, we are all so different.  Keep me posted on your progress, it is nice to have someone that is on a similar infusion schedule as mine!

thanks everyone, take care

Amy

 

Posted 5/6/2009 1:27 PM (GMT 0)
Hey Keith, I feel totally energized after my infusions too! I do remember though at the beginning I would start to get the feelings of a flare (more bm's and looser) coming on about a week before my infusions. I think it took about six infusions before I finally started adjusting and didn't have that feeling the week prior to my infusion. Also don't have the fatigue like I did. I was never sure if it was my body adjusting to the Remi, a healing process going on...or both! Good luck to all of you, keep us updated on how things are going.

Posted 5/6/2009 1:51 PM (GMT 0)
Part of my energy increase is from discontinuing the 6-mp, I stopped it the week before my first infusion. I sleep soooooooooo much better since I stopped the 6-mp.

I choose to schedule my infusions on Fridays because my infusion center (the local hospital) does not give chemo infusions on Fridays so the room is emptier... It also feels like a long weekend when I take the Friday off for the infusion.

--Keith
Posted 5/6/2009 1:57 PM (GMT 0)
Amy,

My GI also put me on Steroid enemas (once a day) and cortifoam (twice a day) to help with my symptoms until the Remicade takes over. I do not take them as often as they are prescribed but they do help. They also have less side-effects than Prednisone.

--Keith
Posted 5/6/2009 2:06 PM (GMT 0)

UGH...today is another off day.  I have been in the BR more than I normally am and just cant seem to eat anything without getting terrible gas pain.  I swear this remicade is making me worse!  I was so much better prior to my infusion.  I increased the pred like I mentioned in earlier post but still not much difference.  I am getting really discouraged now.  I go for second infusion next week and will mention these effects I have had. For some reason I feel like the infusion nurse just wont hear me and proceed with the infusion anyways despite my concerns. Oh by the way,  I get my infusions done at my GI office so I only get the option of Tuesdays because they want a doctor there for my first few infusions.  I guess I was expecting to feel better not worse....sorry guys just really discouraged and upset today!

Well I am off to get bloodwork and see how my iron levels are.  Wish me luck, I dont really want to have to start Venofer again.  UGH!!

Take care

Amy

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