I haven't had any reaction other than being somewhat tired afterwards.CROHNS SUFFERER said:can i join the club please? im due my first infusion tomorrow, im a bit nervous, all the talk of allergic reactions has got me a bit spooked
You sure can join! Welcome to the forum too, CS. Let us know how your infusion goes when you get a chance. Good luck tomorrow!CROHNS SUFFERER said:can i join the club please? im due my first infusion tomorrow, im a bit nervous, all the talk of allergic reactions has got me a bit spooked
Awww, welcome to you and your daughter. I'm glad to hear she got through her infusion okay. Must be scary for a little girl.lesleymariep said:my 13 year old daughter had her first infusion yesterday. no major side effects.. just a headache and some neck/back pain but that could be from laying in a hospital bed for 3 and a half weeks too. no improvements yet either. how long is average for it to show signs of working??
Okay, I am sick. Body aches, coughing ,runny nose...but I'm not running a high temp like my kids did. I am so bummed out! Now I'm worried I won't get the best effect from the medicine if my schedule is out of wack! I hope I will be able to get it later this week. I really think my kids picked up some kind of flu virus because the body aches and pounding headaches are not normal cold symptoms.Shantel said:YES - if I'm feeling a bit sickish - I don't get my Remi. I got a cold several years ago that everyone else in the office was over in like 4 days or so. I had it for over 4 weeks trying to get rid of it. It was annoying. Everything is slow to heal for me on Remi. I'm a lampwork artist (make glass jewelry at a torch). If I burn myself - it takes FORever for it to heal.
I just had my 4th infusion and during it, I started to break out into hives. I was given some Benadryl and they went away. Is this anything to be concerned about or has anyone else had this happen during the infusion?Shantel said:I was just about to agree to up the dose when I started having hives (every day for 5 weeks straight - I've not had them for about 1 week now) and now I have been diagnosed with rosacea and dermatographia trying to figure out the hives thing. This is how I stumbled onto you guys last night - trying to see if there is a connection with all this.
My next infusion is September 2nd. I'm not going to increase my dose this round - just going to see if the hives come back in full force after the infusion.
Fun (itchy) fun!
Full of Remicade induced arthritis! It moves from joint to joint - right now my left elbow is swollen and red and so so sore - two days later it will be gone and my left knee will blow up - going off the Remi and trying Cimzia....coronetrt101 said:I took Remicade a while ago... Does that make me part of the club too??? When I took it it gave arthritis in my left hand for months, anyone else have that?? Not necessarily the left hand but arthritis?
I have to take Benadryl or something like it for 5 days prior to my next infusion. Before this happened I wasn't taking anything prior. So, hopefully it does the trick. I've felt fine since my infusion, no problems.Shantel said:SAM - the only reaction that I've had during infusions is a low grade temp and headaches after. Happens pretty regularly. Did they tell you that you would continue to be able to receive them? Maybe they just have to up the benadryl?
Mine will be after 2nd infusionimisspopcorn said:Third dose done and gone!! Yahoo!!
I have a Remi twin somewhere around here???Where is he?
Got my 4th dose yesterday. YAY!imisspopcorn said:Third dose done and gone!! Yahoo!!
I have a Remi twin somewhere around here???Where is he?
This ^ is from my last infusion. I have since gotten a letter that said I would be denied coverage until my GI sent them the dates of my last 3 infusions and the date of my next scheduled infusion.My Butt Hurts said:...though the billing lady came to tell me that I didn't have preauthorization for that infusion. WHA??? She called me doc's office for me and left a message... "It shouldn't be a problem..." she said. Good god - I hope the insurance company sees it that way!
I don't pre-medicate before my infusion for that very reason. I figure If I have a reaction they can give it to me then?? Do they ask you if you want to be premedicated, or is it their protocol to give it?Skinny Dub said:Figured I might as well join the remi club on here since my second infusion will be this coming up Tuesday, and my third will be the Monday before Thanksgiving! I'm hoping I can start to feel some what normal next week after the infusion.
Question for everyone do you have someone drive you to the location or do you drive yourself? I only ask because last time they gave me benadryl and made me a bit sleepy but was awake when all was said and done. This time around I believe they will give me clariton instead of benadryl. The hospital is maybe 5 miles from my house so I don't have to go far and my girlfriends mom offered to bring me if I wanted. But yeah I'm excited I just want it to be Tuesday already. :mario2:
They ask if I want to be premedicated, I always say "No". They must have standing orders, but its every patients right to refuse what ever treatment they don't want. (I do get nervous though after reading about peoples reactions. Especially because I had 2 doses last July before my resection and then stopped the Remi until now)Shantel said:Carrie - do they not give you SOMETHING (Zyrtec, claritin) about 30 minutes before the infusion? I thought that was protocol. They also told me I could take something before I come in - but I figure what the heck - let my insurance pay for it......
Give it a chance. I am finally starting to feel better after my third dose. Just let him know your symptoms.chelli said:I have a question. I've had 2 infusions so far. I now have the big D. Very watery and frequent. Does this mean that the remicade is not working? Should I tell my GI that we need to find another treatment?
Thanks for your help.
Shantel said:Are you saying the Remi "caused" the fistula or that you just got a fistula and they took you off Remi? I thought Remi was good at clearing them up - of course it would take more than just one infusion.......
I am scheduled to start my 3rd dose 10/30. My GI doc concurred with IMP and told me that I should give it a chance.Shantel said:Did it just start - or have you consistently had it the entire time you have been on Remi and it is getting worse? What is your loading schedule for Remi? Are you 8 weeks apart or are they infusing you closer together at the beginning?
I told him my symptoms and he suggested, like you, that I give it a chance to work.imisspopcorn said:Give it a chance. I am finally starting to feel better after my third dose. Just let him know your symptoms.
Plangirl, Remicade has a Payment Assistance Program (PAP)for under $27K . It is too bad they make you and your doctors jump through all these hoops. Prednisone caused Osteonecrosis in both of my hips and I had to go back to it, it quit working, and now it's Remicade. I 'll bet your doctor will get it for you. The side affects from Prednisone are very unpleasant. I hope it works out for you.Plangirl said:Did anyone have issues getting approval from their insurance company to begin Remicade?
I had colonoscopy on 10/2. The doctor could not complete it. I have a stricture and an ulcer near the stricture. I was diagnosed in 2001 and ended up having to have a resection in 2002. I'm afraid I'm going down that route. I am currently on prednisone and I HATE it. I'm not sleeping. My hair is a mess and I can't even begin to express how I feel emotionally.
My insurance has refused to approve the use of Remicade and now my doctor has to appeal. What has been your experience with this process? Any advice?
Wow davek, That's a pretty big medication error. Who was administering it, an actual doctor or an RN? Can you find out what the doctors orders actually were written as?davek said:And the thing is that it's not even like "wow, you were doing good at 2mg/kg". I was fine to begin with as I started on this after having a small bowel resection surgery that completely removed all the crohns in my body. So I didn't have any pains to begin with. The remicade was a preventitive measure to keep it from coming back. I hope this messup isn't going to mean it comes back really soon