I am starting Remicade Weds. I'm wondering what it is like. Do you feel tired/sick the first day? How fast does it work?
Thanks!
I'm starting Friday, and I have exactly the same questions..
Kathy, I had to postpone my infusion because of G.I. upset that I think I got from kids (both sick last week). I thought I would be telling you of my experience today before your appt on Fri.
I will post what happens when I get the infusion. I still need to reschedule.
Jodi
I'm a Remicade fan. I had great success with it, had no side effects, and actually enjoyed the time it took to get the infusion. Takes about 2 to 2 1/2 hours so just kick back and relax, take a nap or read a book. It's just like any other IV treatment - just have to do it at a clinic or a hospital. I had pretty instant success with Remicade and learned to love it. Unfortunately I ended up with a bad sinus infection and my rheumy took me off Remicade and Methatrexate. Now I am on Arava. Good luck you guys and hope it does as well for you as it did for me.
Hi Jodi and Kathy.
Just read both your post about starting Remicade and I wanted to say how glad I was to hear that you both are starting a biologic and hope that this is the drug for you...
Jodi and Kathy
Toni
My appt is for tomorrow, Tues. I'm very hopeful this will get me back to my old self. That would be so great!
A question for Sewez:
Is your RD giving up on Remicade or just until you are over the sinus infection? I'm on Arava now. I started on 20mg and am trying 10mg for now because of hair loss. I feel like I have gotten steadily worse since summer. I used to think I could handle it but now I stay home mostly. Pain makes me want to just take a nap! How is Arava working for you?
Hi
Good Luck
My transfusion was two days ago. I was nervous... the iv stick wasn't fun because I have difficult veins. The nurse was experienced though, so it wasn't too bad. My blood pressure (top number) went from 107 to 130 in 15 min. after starting. I was given some meds for that and then the rest of the infusion went well. We watched TV dramas and had a snack.
The next AM I woke up with no burning wrist pain and a lot less foot pain, the ouchies that really give me trouble every morning. I realized I wasn't cringing with the all over, can't put your finger on it ,feeling!My Rd said to it would take up to a week! So, I am hopeful that Remicade is going to change my life!
Jodi
Hi Jodi,
I am so pleased to hear how well you did with your first Remicade infusion
I started my Enbrel this last Friday, so far so good...I hope it too stays that way...Although I think it is to soon to see any real results yet...but I have my fingers crossed for us both...
Keep us posted as to how everything is going...
Take care Jodi and enjoy the new YOU...LOL.
Toni
Hi Jodi
I am going to start remicade next week and I was wondering if the remicade made you have an upset stomach or any other little side effects that you have noticed? I am so glad to hear that you had none of that burning pain thats so great well good luck Take care
All in all it was a pretty good day.
I dropped Ally at day care, then drove to Olean. I was pretty achy, I had dropped a cup of coffee earlier, because my hands didn't work, and during the drive I had to thread my wrists through the steering wheel because I couldn't grasp it.
When I got to the rd office, they sent me straight back to the infusion room. Joanne, the infusion nurse greeted me and had me hop on the scale. The infusion room is quite nice, with 4 leather recliners, each with a small table beside it, and a comfy chenille throw. There were pretty floor lamps, and a nice TV, with 70 channels of cable.
An older woman was being infused and chatting with the rd when I hobbled in. Everything ached, my toes, ankles, knees and hips were pretty bad, and I limped/hobbled, gimped in pretty awkwardly.
Joanne set the IV and actually she was one of the better ones I've experienced. Not painless but ok. She hooked me up to the BP monitor and took my temp. After I was sitting comfy with a pillow on my lap, and my feet up, Joanne brought me a cup of tea and offered me a snack from a huge goodie basket containing cookies, crackers, chips, breakfast bars, and Halloween candy.
The older woman and I chatted a bit, she was actually our rd's first Remicade patient, 69 infusions ago. She said she actually felt better the next day, and has been very happy with it since.
I felt fine during the infusion and after I was done, I had planned to go to Home Depot, then pay my homeowners insurance.
I drove over to HD and when I walked in was debating getting the electric cart, but decided I would use a regular cart sort of like a walker, and lean on it. I wandered around HD for about 90 minutes, doing some price comparisons for the kitchen, looking at carpeting and paints.. sitting and looking at wallpaper books you know just hanging out in one of my favorite places. I bought a push broom, and went to my car.
Next I drove over to the insurance office, and parked and as I was walking across the street, I suddenly realized I wasn’t hobbling, I was STRIDING. My feet didn’t hurt, neither did my ankles or knees. All day long the next day I kept being struck by the realization that my knees and ankles especially were actually working. I’m figuring it was the placebo affect, but I’ll take it.
Monday morning I was stiff as usual, but it wore off faster than usual, and other than the nasty sore hip, I actually felt pretty good. My fingers were bending easily, and my knees were working. I was able to do some work in the yard, and some more prying up tile.
This could be interesting....oh I walked on tiptoe for the first time in about 20 months.. I just for some reason decided I would try it, and was able to. A few months ago the pain management dr asked me to try to walk on tiptoe and I couldn’t.
I am hoping this continues, even if its just the placebo effect, I’ll take it!!!
The effect wore off at about day 6 or 7 but It was the first infusion and I wasn't expecting any relief and I got quite a bit of relief. I was really surprised. it really helped with the pain and swelling. The fatigue was still noticeable but the pain was far less.