Last Friday, I started Remicade in hopes of it working to keep my crohn’s disease under control. I am also continuing to take my azathioprine (imuran) daily.
I had been feeling so totally crummy. It’s like I’d been drinking a “lethargic” potion.. my body was so tired, my arms and legs so heavy – like lead. To make myself get out of bed, or off the couch, required every ounce of willpower I had in me.
But in the last week, since having had my first remicade treatment, I’m slowly starting to feel more normal – as if I even know what normal may feel like any more. I am still having some crampy, even sharp pains in my lower abdomen.. but overall, I am feeling much less pain than a month ago.
I’ve been on Flagyl and Cipro for almost 30 days now (for a small abscess and a flare)… so my feeling better could be attributed to the antibiotics… I’m hoping that’s not just it though. I really just want this to work.
How did the Remicade Treatment go?
When I was looking for information about what they do, I couldn’t find much, other than it was given via IV. Here’s how things went for me…
I had mine done at the hospital. Some people get their treatment at the doctors office, but apparently, some insurance require it to be done at the hospital.
When I got there, I wasn’t sure where to go, so I asked at the information desk. A really nice volunteer took me up. She even made sure I was in the correct place before leaving – just in case I wasn’t where I was suppose to be.
I had a room to myself, with a pretty view of the woods behind the hospital. There was a bed, which I considered snuggling into right away, but instead I opted for the not-totally-comfortable recliner and kicked off my boots.
The nurse explained a few things – that it would done via IV, they would start it very slowly and check it every 15 minutes, slowly upping the speed until it was going all the way. She said they’d found it to cause less issues starting slower (as in, less irritation, less allergic reaction). When I get there, they place a call for the remicade medication to the pharmacy. It takes about 45 minutes for it to get processed and brought up to the room. Once there, they hook it up to an iv – which they started just before it got there, as well as a blood pressure cuff. They also put a steroid (similar to prednisone) in the iv, which also helps to keep down any reactions.
I asked for a blanket (she pulled from the warmer, yum!) and snuggled in with a book – Mortal Fear, by Greg Iles (I haven’t got my Amazon Kindle yet, but when I do, oh boy!)
I’m not sure if I was just tired (seems like I always am any more) or if it was the medication, but within minutes, I could hardly keep my eyes open. I dozed in the chair, only slightly aware of the nurse coming in to check things, never aware of the blood pressure cuff taking any measurements, and about 20 minutes before everything was done, I was wide awake again – but feeling a nasty headache.
The whole visit took about 4 hours, but we were slow getting things started. She said it takes about 2-2:30 hours for the iv remicade to go in (I didn’t bother to check the clock, but will next time) – so the rest is just getting things ready to start. Once it was done, it was very quick getting out of there.
No reactions, no issues at all, other than the nasty headache, which lasted the rest of the night.
My next appointment for remicade will likely be Jan 30. It’s suppose to be given at 0, 2 & 6 weeks then moving to every 8 weeks – though I think my cousin gets his 3 months apart now (he has colitis, so maybe it’s a different timeline.. not sure).