Today is my first remicade infusion. I barely slept last night due to cats and children and then being in so much pain. It's rainy and miserable today and my joints aren't happy. I am now passing the next hour and a half running errands and eating something so that I can perhaps avoid having a panic attack. Tired + pain + new situation has my anxiety levels elevated beyond belief. Having anxiety disorder and chronic illness isn't fun.
I, however, am trying to look on the bright side. I get to hang out with my best friend (she's driving me to my infusion and back again), spend a couple hours reading and relaxing, and then veg out for the rest of the day (hopefully).
Any last-minute tips on making the infusion experience a good one?
I'm sorry I don't have any tips, but I am interested to hear how it goes and how you feel afterwards (tired, etc.). I have a feeling I will be going on Remicade next.....a year of Simponi and MTX doesn't seem to be working too well, and I've already gone the Enbrel and Humira route.
If you go to lambs discussion about first stem cell drug approved in Canada, on the second link you will see that there very possibly is some great help on the way for anyone who suffers from imflammatory disease, notice the Crohn's patients were given the same meds we take, took them an average of 14 years, new drug made them well in 9 days, yes 9 days!!!! Photo of before and after are amazing!
Don't loose hope!!!
SK
Suzanne Hall said:
I'm sorry I don't have any tips, but I am interested to hear how it goes and how you feel afterwards (tired, etc.). I have a feeling I will be going on Remicade next.....a year of Simponi and MTX doesn't seem to be working too well, and I've already gone the Enbrel and Humira route.
Good luck to you girl, hope it makes you feel better! Take a coloring book and crayons, draw something for your children, put it on the refrigerator, with the ones they drew for you!
I am waiting for the hospital to call me with my first appointment. Nervous about getting remicade but have no choice but to try it. Best of luck to you & many HUGS to go with that. Keep us updated.
I'm back! They gave me benadryl and tylenol before my infusion. They brought me lunch, but it wasn't gf, so I couldn't eat it. They ordered celiac-friendly lunch for me for two weeks from today. :)
The benadryl (combined with not sleeping well for the past few nights due to pain) is making me veeeeeery sleepy. I haven't had benadryl in 15 years! I think next time I'm going to forgo the tylenol, just because I'm trying to be gentle with my liver.
I go back in 2 weeks, then four weeks (and a few days, as I'll be out of state), then every eight weeks unless my rheumy orders differently.
So far, so good. I got to listen to podcasts (too tired to read) and RELAX, which was wonderful.
Glad all went well for you. I will be getting my infusion at Middlesex Hospital in Middletown. Do you mind me asking what hospital did yours? Just wondering about that Benadryl. I better go with someone who could drive me home, because if they give me benadryl I will be too tired to drive too. :-)
Nym, I missed this till now, but glad to hear all went well, and now hope you can get a good night's sleep... my "dream" haha... Sleep has always been a problem, since I was a kid.
I had my first infusion last week. And, I was also anxious about it. But know I feel so much better. I still have some hand pain but I just had my 1st infusion. I will get another one next week. I am glad you are doing so well. Especially having kids around the house and all of that activity and responsibility. I have found that I have more energy which I didn’t know would be a side effect. But, yeah, anyway.
Have a great Memorial Weekend and remember a friend or relative who is or has been in the military. Pray for them.
Thanks, everyone. I'm not expecting miracles right away, but am hopeful that this will do good things for me. I'll never be pain-free, but I'd like to have more energy and less pain...and to slow down the fusions in my si joints, vertebrae and chest.
I'm utterly exhausted. I wasn't hungry until just now, when all I really want to do is crash. My husband is whipping up some food and I'm planning to eat and then hopefully get a good night's sleep. If I'm up to it tomorrow, I have a "Blue Mamas" meeting (for moms with depression/anxiety/big life changes) and then will be spending the day on my parents' couch (with recliners!!!) watching cable tv (which we don't have - I haven't watched tv in about a year!), and vegging. They're on vacation, so my kids like to have sleepovers at their house while they're gone.
Good luck to you girl, hope it makes you feel better! Take a coloring book and crayons, draw something for your children, put it on the refrigerator, with the ones they drew for you!