New Member w/Remicade Question | Arthritis Information

Hi Everyone,

I wast just surfing the web hoping to find an answer to my question and found this site. Looks like many topics discussed--so, hopefully I will find some insight.

I have RA/Psoriatic Arthritis plus I also suffer from other diagnoses: diabetes, low thyroid and high blood pressure.

I have been doing the remicade infusions for about 14 months now and also take methotrexate. Seven vials and seven pills. It does help me. The last bad flare up that I experienced was back last October and it was the bottom of my feet that flared. What an awful feeling. And to walk on them (only when necessary of course) was torture.

My last infusion was this past Wednesday afternoon. I always make my appts around 12:30pm and they usually start within 15 minutes--by the time they get me all hooked up and so forth. It has always been my experience that I don't leave the office much before 3:40 pm--for the remicade to be done and un-hooked from the IV. A good 3 hours is my norm.

Well, the nurse that usually gives the infusion to me was out on medical leave and they had a different nurse there filling in for her. My remicade didn't start til 1 pm and he had me getting out of my chair at 2:45pm. Only an hour and 45 minutes.

I was feeling fine. Left the office, went home, and even ran an errand with my daughter. By 5:30pm I was starting to feel cold. My Mom had made dinner which consisted of hot dogs, french fries, and boiled spinach. I didn't want the hot dog or french fries--I begged he to give me the spinach--just so I could get something hot inside of me.

I tried to lay down and cover up with blankets--didn't help.

I then took a hot bath. I literally felt like an ice cube in the bathtub. I could feel the hot water around me just go cold. In fact, I refilled the tub 4 times with hot water. Finally, I did manage to warm up--but, then started mild panting for my breaths--which lasted for about 2 hours.

Thursday morning I called my Dr. and left a phone message with her receptionist telling of the reaction I had to the infusion. Later, there was a phone message on my machine saying that the infusion was given to fast to me and that the next time they will go slower and also give me claritin.

I guess my question is--Isn't there supposed to be minimum of how many hours you will need to be given the remicade?

I know when I was being told about the treatment in the very beginning--I was told to expect to be there at least 3 hours. It just seems to me that the Dr. never told the importance of this to the nurse that was filling in and administerred the infusion to me. And, I had to suffer for it.

I am disheartened by this experience.

Thank you for hearing about my situation.

When I was on Remicade my infusions were about 2 hours each time. I did fine on that schedule but others may not. I'd write a grievance letter to the doctor about the experience and from now on you'll know that you need to be there for a minimum amount of time. It's always disheartening when there are medical lapses or errors. Remember we are always our own best advocate. Take care. Lindy

Thank you so much for your thoughts/ideas. My Primary Dr. wasn't in on Friday but I have a message in for her to get back to me tomorrow in regards to this. I definitly want to see if she can refer me to someone else.
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