Went for my 3rd loading dose of Remicade today. The Remicade nurse took one look at me and asked when my symptoms started coming back. I told her it started wearing off, meaning morning stiffness & gelling was back, after 2 weeks. That loading dose was to last a month.
She looked at the dates I had my other 2 loading doses to make sure there was not an error in between the weeks I got them and nope no error.
She kept looking at the calendar and said that she was more than sure I would not last 8 weeks after this last loading dose of 200mg. Then she asked if it was working for me and how well it worked. Then she asked when I get to see RD again, Feb 24th. She said since I will probably already be reverting back by that appt that RD will move my next remicade infusion 2 weeks after my appt, have to have time to order the remicade, that why so long. Then RD will probably increase it and/or move me closer in weeks in between infusions.
She checked my vitals... my pulse was high, and my BP was higher than normal. So she went and told RD about it to make sure she still wants to give me my infusion today. She came in and looked at me and asked me if I was in pain I told her had been since yesterday evening. She asked if I was out of pain pills, I told her no. She said did you take them, I told her one Darvacet and it done nothing for my pain. Then she asked if I took my Panlor DC, I told her no because it wires me and I was needing some sleep. Which I did not get any last night. Then she was going to give me a different pain pill, but then she decided that since I get paranoid on LorTabs, that the codine or some thing which that name, was making me paranoid. And she did not want to RX me any more pain pills with that in it. That is why she RXed me the Panlor DC.
So... she decided to give me a 30 min steriod drip and then after that if my pulse was lower than when I got there I could get my Remicade infusion.
My BP came down and pulse was a little lower, so it was the pain that was causing it. SO I got to have my infusion.
I am sooo tired.... running off 2 hours sleep still.
BUT
I can turn my head, and I am not hurting as much and the swelling in the ball & socket of my shoulders has went down. I still cannot touch my face, but it is a little closer to getting there now. And my back/neck/shoulder area is feeling soo much better.
Wow, Joonie. I'm glad you're not in as much pain now. Hopefully you'll get a full night's rest and be much better in the morning.So... I am just waiting for that.
MsA - I hope so too. I am about to fall asleep now, but I do not feel like going to my bed. I ended up increasing the dose twice and still ended up at every 6 weeks.
But, once we figured out the right amount that med worked great. I took
it for close to 3 years before starting Orencia.
I hope this brings you the relief you need...we all just seem to be waiting
for the "right" drug. Man... I was kinda jealous of the lady that was in there getting her orencia infusion today. It was only 30 mins long, and I had to sit there for close to 4 hour. She was in and out in an hour. BUT when I found out it was ever week, I was like nope, cannot do that, live too far away and hubby only has so much time he can be outta work or needs to be outta work.
Remicade has been good to me. It truly helps my joint pain and crushing fatigue. It lasts nearly the entire 8 wks...we switched to a 7 wk schedule a few months ago, but over Xmas, an extra week got tacked on and it was not a problem. So I am back to every 8 wks...your gelling and AM stiffness...yes, when these return in me, I know I am ready for my next infusion. I had mine 10 days ago and am going strong. Doc mentioned Orencia one time, but I hate coming that often for a short infusion. I'd rather spend more time every 8 wks than every week. Ugh.
orencia is monthly after the loading dose.
I suspect you will see both an increase in your dose and a shortened infusion interval until you are stable. You show signs the med works they just have to get it working longer
thanks, Buckeye...i think my doc also mentioned Rituxan as a possibility but since Remicade is working so well, don't see any reason to change. Orencia once a month...still too often for me. I wish 8 wks were more like 6 mos (I think Rituxan is twice a year...) but then if it doesn't work so well, you wait a long time to get it again (or switch to another med...)