My daughter did one round of the Remicade in the hospital, while we were waiting for insurance to approve the Enbrel. It was interesting. They told you that you have to have a TB test before they start you on any of the biologics?
She was on a pile of Prednisone from several months (plus Methotrexate & Sulfasalazine) and also had two Prednisone pulses when she was in the hospital the round they gave her the dose of Remicade - I want to say it was 1200 mg? through the IV - so 2400 mg. She was mildly moon faced up to that point, and after that? Yeesh. She got the buffalo hump on the back of her neck, seemingly overnight. And then she was also very moon faced.
We did as much low sodium as we could, with her diet but she gained about 25 pounds or so (she lost it all, and more, over several months, after weaning off the Pred), over the 6 months she was on the Pred. The other things we/she noticed was some neck pain, which I assume was from the 'buffalo hump' messing things up; bad insomnia; very moody/snappy/grumpy; stretch marks (they monitored her closely for Cushing's); she saw a bit of an uptick in acne; she was thirsty all the time; she was quite foggy, mentally - couldn't maintain her line of thought very well...there were probably a few more things but I'm exhausted right now and can't think of all the side effects she dealt with.
She ended up back in hospital on NY's, just a couple of weeks after the pulses, because they thought she had Avascular Necrosis in her one shoulder, caused by the Pred. That was just piles of fun, lol.
Have a good friend in the US that has Crohn's. She's on Humira right now, but they're throwing around the idea of moving her to Remicade.
Those biologics can make a world of difference. Although it's a completely different disease process, the biologic my daughter is on turned things around for her. It took a while but she's a million miles away now, from where she was 2 years ago - heck, even a year ago.
I wish you nothing but luck.
Last edited by Minnie; 01-18-2014 at 10:20 PM.
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