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I survived Remicade!!
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24 hours post Remicade, feeling VERY hopeful. I was wrought with anxiety going into my first infusion yesterday. I ended up having a mild reaction mid-through.. They gave me some Benadryl and Steroids, and the reaction seemed to settle down. It seemed to take forever, 3 hours… The IV insertion, not nearly as bad as I thought.. My thoughts after I left – I feel like CRAP! Exhausted, ache-y. EVERYONE calling, ((I am tired- I am alive- leave me alone)). Late last night – my first “hmmm” moment – my almost constant blurred vision was refocusing in and out while I watched TV. I secretly smiled, thinking “This has GOT to be my imagination”. Then, this morning, when I woke up, my first thought was “I feel refreshed”. I have not felt like that in almost a year.. I announced to my daughter (who slept by my side), “ I am going to make us a huge breakfast – and did so – which we both enjoyed. I know I overdid it today, because my hands swelled and legs weakened, but I know it was not all in my head. I SO did not want to like Remicade, but so far, I am looking at it in a new light! I will continue to update through my “loading series” – which I am not looking forward to – but am also a little excited to consider it may give me my “energy” back..
Heather Posted on 11/07/09, 10:11 pm |
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Glad to know your Remicade infusion went well minus the reaction, but at least it was caught in time. I am glad you are feelingbetter. I did Remicaide for a while and I did feel better right away as I remember. The vision problems I did not have until now that I am on Plaquenil and Orencia.I know what you mean about the vision coming and going.That happens to me as well.Good luck and continued success with your new med. 
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Heather - Remicade was the best drug for me ever. When I started it, I couldn't walk or dress myself - the day after the first infusion I was a new person. Didn't have to use any of the vicodin my rheumy had prescribed.
One caution, be sure to get your blood tests. I developed elevated liver levels and had to stop Remicade after taking it for five years. Lynne
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Hey Heather I am glad you got through your first dose without too much trouble. I hope it will work well for you. Take care.
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I'm glad your experience was a good one Heather. I had instant relief from Remicade, and while it wasn't perfect was very good. The only time I experienced fatigue was right after an infusion. My wife and I went to dinner after my first infusion, and I fell asleep before I finished my meal, and slept the entire hour drive home, and all night and the next day. After that, everything kept getting better.
Good luck with this. doug
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Thanks for the kind words all. I am still feeling well, so hoping it lasts. One thing I did not mention which I was curious if anyone else felt the same: While it was nice to be around others, it was also very depressing to see the stages of illness and disfigurement. Also very loud at times. I think I would almost prefer home treatements, but guess the insurance would not pay for it?
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SO AWESOME to hear this news!! Please keep us posted.
Tort
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Good for you! I'm going to award you the "braveheart" award! I will keep you in my good thoughts and look forward to hearing a good report in the weeks to come. -Caroline
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Angel - I know how hard it is to see others but in my remicade group, it became a social club. You forgot about the disabilities and pain and just enjoyed the person and their stories.
Lynne
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Thanks for sharing your first Remicade experience. I haven't had to try an infusion yet and have been curious and nervous about the idea. I'm so glad it went well and your mild reaction was tended to promptly with a favorable result.
It takes a courageous person to try a new drug. I think we're all pretty courageous. Glad to hear your feeling some relief:)
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