Pre-meds and side effects

So I've noticed that most people on Remicade get pre-medications either before or during their infusions, and it seems that not everyone gets the same thing. I guess that just depends on the doctor and what they think you need.

I had my Remicade infusion today. I get pre-medicated with IV Benadryl and hydrocortisone, they start these first, and then start my Remicade about 15 minutes after the pre-meds finish. By the time my remi starts, the benadryl has kicked in and I get really sleepy. This is also the time that my knees start jerking! I think it is a side effect of the benadryl as well, because it wears off by the time I'm done and go home and I can sleep fine there when I'm in bed. But when I'm at the infusion lab, and I'm sleepy and it's quiet I suddenly get restless leg syndrome! I spend the 2-3 hours trying to fall asleep and having my legs jerk me awake....it's so exhausting.

Anyway, I'm just curious.....what pre-meds are you guys on? Do they cause any side effects for you?

And what about the Remicade too? I've never really noticed any side effects from the remicade, to be honest, my immune system must be pretty strong. I have two children in elementary school who are sick right now, and my husband is sick. I'm the only person in the house NOT coughing, sniffling and sneezing. But I'm also the only one walking around with Lysol in one hand and hand sanitizer in the other. Kleenex is under my arm......:lol2:

I have had the 3 loading doses.

I have received no pre-meds. Sounds like that is the standard practice in my infusion center. Which I am glad, since I want to go to work afterwards. They do warn that they will not let you drive afterwards if the need arises that you need the pre-meds.

I have had some minor post infusion side effects:
-day after - hardcore nausea. Goes away after a day.
-second day - Muscle pain starts on my one side (starts in back and wraps to chest) and lasts about 2 days. I think it is muscle since if I jump on the treadmill it goes away.....muscles get loosened up. Told the GI about this and he said that he does see people with these kind of "unexplained and weird" pains.

I have young kids at home. I did just pick up a cold that they had for weeks. I finally kicked it by sleeping a long time over the weekend.

I would also say that my skin is breaking out more on my forehead since starting the Remi. Other than that I haven't noticed anything else so far.

You can ask them to switch you to a non drowsy antihistamine, like claritin or reactine instead.

I never got sick worse than anybody else in the house while on remicade.

I had my first infusion on Friday. They gave me a dose os steroid via the IV before starting and told me to tell them if I felt any strange itches, which I didn't. Have had a bit of nausea, mainly in the morning but nothing major. It was like that when I started on the Aza.

Ive had 3 doses so far and each one has been after a dose of steroids. Ive not had any problems really. My eyes seem to loose focus for the 1st hour of the infusion but apart from that its all good. Im still on aza to keep my antibodies from attacking the remicade

I was just diagnosed with Crohn's Disease about 2 months ago and I've had a tough time. My colonoscopy biopsies (3) all came back conclusive of Crohns. G.I. doc put me on Pentasa and Prednisone. It did not work. I landed in the hospital a day later with a partial bowel obstruction. I was in the hospital for 7 days and found out that my Crohns is in fact advanced, so the Pentasa will not work for me. I started Remicade 2 weeks ago and I have my next infusion on Monday. The first infusion was ok (the nurse got the i.v. on the first try, YAY.) My veins are horrible. After the infusion and even during I started feeling body aches. Like flu symptoms. The next few days were horrible, I could hardly get out of bed. The nurse said that before my Remicade infusion on Monday, that I will be given some premeds. I will be getting Solu medrol and Benadryl through my I.V. My husband will be driving me, thank goodness. Has anyone had these premeds? Does anyone else feel severe body aches and pains after their Remicade infusion? I would love to hear from you! Thanks!

My pre-meds are a Claritin and a Tylenol. I have not experienced any side effects with these. I experienced some insomnia and restless legs when I was in my loading phase of Remicade (i.e. in the first 2 months), but have not experienced it since. However, I am also now in a flare and/or Remi has stopped working.

Scoutfinch, I noticed the last two nights my legs have been very restless too, but I think that is more from the tapering prednisone dose. It still sucks to be up all night with jerky knees though.

Sorry to hear the Remi has stopped working. I hope mine keeps going strong after my surgery.

@baylorfan - I get the same pre-meds - didn't when I first started, but tis past year started getting them.....

I haven't noticed any strange aches/pains - at least nothing unusual.

I get clariton and tylenol. I have been getting remicade now for 2 years and it is my miracle drug, I have not had any side effects, i get it every 4 weeks. I usually sleep through my infussion, mainly I think because of the premeds, but I am fine and ready to go right after I get my infussion. Shannon

I have been on remi for 4 yrs. In the beginning I did not get premeds. Then I switched infusion centers and started getting benadryl and steriod. I hated it. I would fall asleep while getting the infusion then the steriod would keep in about 10pm when I was trying to go asleep. Now I am back to no premeds. I am lucky to not have any side effects

I started out with claritin and tylenol, which was standard at that center. Then I switched hospitals and got nothing, which was fine with me. But after a few infusions, I started getting some hives, which may or may not be related to the Remicade, no one knows. I don't get them during the infusions, it doesn't seem to correlate at all time-wise to the infusions. But after that, they started giving me a sedating antihistamine like benadryl. It makes me drowsy but I can't sleep, it's super annoying but whatever. I just go home and sleep it off.

I find that I get very tired for a few days after my infusions (not just from the premeds, that wears off quickly, plus I got this before I started getting premeds). The severity varies, sometimes all I want to do is sleep, sometimes I'm just tired. But it always goes away after a few days, and now that I know about it, I can plan for it.

DD gets Benadryl and Tylenol/ She usually falls asleep on the way home (the playroom is far too exciting to take a nap while we are there). She has no complaint about side effects.

I get a shot of steroids, tylenol and a pill of benadryl. I usually fall asleep during my treatment. Last tuesday I loaded up my robert jordan audio book and when my nurse woke me after my treatment, I semed to have lost a few chapters of the story LOL

Other than being dead tired for the next 24 hours I have no visible side effects. Pretty cool.

I was so scared of getting remicade and now I just hope it keepson working and working and working...

I've just started back on Remicade after getting histoplasmosis, then having surgery on my small bowel. I've had two infusions so far and I get Solu medrol and Benadryl as pre-meds. I get sleepy and usually sleep some during the treatment, but no restless legs. However, after the treatment I'm usually drained of energy. I get my treatments in the afternoon so I don't have to go back to work afterwards.