How Do You.... | Arthritis Information

How do you handle the last couple of weeks before your next infusion?

I have been slowly hurting more and more stiffness and symptoms coming back for about 2 weeks now. It has gotten almost back, if not worse, to how I was before the Remicade infusion.

My body hurts more and feels the same as it did when I was only on 5mg of pred. It feels like I forgot to take all my meds for days, but I know I have not.

The swelling in my knees are not as bad as they were, but they are swelled and REALLY stiff. I am back to walking like an old person. I about killed over when hubby made me go to wal-mart yesterday. By the time I got to the door... I thought I was going to fall over. I even had my eye on an electric cart... that is how bad it was. I just walked to a bench and sat down. I asked hubby why he made me go to town after I told him I was hurting and non-mobile and he said... "I did not tell you, you HAD to go to town." OH... but he did. He got my clothes ready for me and even waited on me to get dressed and everything. I guess... I did not put up a good "fight" to where he would tell me to stay home.

Oh well... today seems to be a bit better. I have been taking naproxen last night/today and seems like the pred is working for now. But by 6pm.... I will be hurting and stiff again.

My back has been killing me, and my neck too. I woke up yesterday with a wicked head-ache. I mean it was all up the side of my neck and my should was swelled and it was just awful. I move my arm that had the swelled shoulder it would make my head hurt worse.

My dr said the best thing about Remicade is they can tweek the dosage and time between infusions, so hopefully once you have your first 3 infusions they can set up an interval and amount that works for you. I get mine every 7 weeks/500mg. Good luck holding out till then.I'd call the doc and see if the next infusion can be moved up. Once past the loading doseyou can have them as often as every 4 weeks. You may need a shorter interval and a higher dose to get everything under control

Well... I am hoping they give me a little more this go around. They gave me 200mg last time and that was a month ago. When I go back Thursday... it will be my last loading dose and then I go back in 8 weeks for my next infusion.

I so hope they give me more then the 200mg they gave me the last 2 times, because it did not even last a month on that dosage. And if I have to go 8 weeks on 200mg... I am sure I will be calling RD for something to help me make it thru.

I think I get what I get... because they pre-order it and only for the patients for that day. But maybe someone will not show up and they can give me their vials

I tell the nurse before what I feel like, not sure if it matters much... maybe I will go in all messed up like I have been this week and then they will change it.

Yea good luck hygrading someone else's vials. You will probably not get any change in your next infusion if you don't let them know ahead of time what's happening. Maybe you could speak to the infusion nurse a couple days before you go in. I was on 6 weeks, the dr moved me to 8 weeks, I was miserable the whole 7th week, that happened for 2 infusions. I told the infusion nurse, she called the dr and got it moved to every 7 weeks. And getting the amount moved up to 500mg was based on my bloodwork.

Oh they already ordered mine today. They order Thursdays on Tuesday. And Tuesdays on Friday.