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07-05-2007, 11:01 PM | #11 | ||
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Magnate
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Even with a serious dose of Benedryl [75] Which should almost knock out a horse [which, I believe I am NOT] I get a HIGH from the IVIG infusions..I'm on one now as I had an infusions this AM... It's kind of like a war between the benedryl and the little IG 'nanobots' going to work and makeing things better! I would liken it to a dose of serious tranquilizer PLUS a triple cappucino .. Not only are the 'upper's' in all this working but the 'downers'? Just chill out about the whole thing and go with the whole process. Both are necessary in the long run..
Bring a good stupid book to read, one you really don't have to concentrate on as you really know what the plot is anyhow....Once you are thru the introduction phase and maybe can be infused at home...well, I have to admit, that my nurse and I, well I DOZE pretty well..she does not. And we both like the same TV shows...what more could one ask for?...My nurse I love, she's come on weekends and on holidays...All she asks for is fresh brewed coffee...and that she GETS plus snacks [we've a very limited selection] if she wants.. Think of it this way...YOU are getting SUBWAY! My hospital never varied...synthetic bagel and oatmeal or grits in the AM w/DECAF coffee...and dry turkey sandwich on white w/DECAF coffee at lunch.. Talk about boring after a few months! So, being overly wide-awake is not an unusual reaction...I do have that tee-shirt too? So for now, I'm just waiting for you to say , GEE? Is this ? Maybe Working? part...sometimes it takes a few months..so just wait, and promise not to panic...We all know about the stress issues that make things worse..well, you are in a stressful place now...it WILL change. s - j |
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07-06-2007, 04:55 AM | #12 | ||
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Magnate
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I'm glad it went fine and now its over. Its so nice when offices and people do small things like bring lunch. It goes a huge way and makes one feel more comfortable. Take care and I hope this helps with your pain and getting back to life.
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07-06-2007, 07:30 AM | #13 | |||
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Member
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Good Morning J,
I'm having a side effect of the IVIG......it started last night and is really hurting this morning......low back and hip pain. ugh! I hope it goes away on it's own, not sure why IVIG causes that but saw it in the 'not so common side effect list' on a website. Other than that I feel ok. I don't feel the high but maybe it'll take a few times. Yes the Subway was a nice way to break up the time there and tasted pretty good too! I'm scheduled again for next Thurs......I hope my hip feel better before then. Roxie
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. Dx'd with Spinal Arthritis 09 Upper and lower Spinal Cord Stimulator surgery Replaced IV port 09 Had surgery for IV port for IVIG infusions 07 Halo 360 & 90 procedure for Barrett's esophagus Dx'd Chronic Axonal Neuropathy & Myopathy June 07 Dx'd IC May 2006 (after suffering for 25+ yrs!) Gall bladder surgery Aug. 2004 Gastric Bypass Dec. 2004 Dx'd: Barrett's Esphogus July 2004 Bladder surgery 2000 Dx'd: IBS 2000 Hysterectomy (fibroids) 1999 Laminectomy 1989 Dx'd: Degerative Disk Disease 1989 Cyst removed from my ankle -twice 1986 |
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07-06-2007, 09:28 AM | #14 | |||
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In Memorium
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Good to hear the actual infusion went so well, and hope that the side affect you are feeling will let up soon... is there a liquid pain killer you can take that may help?
(I get the hyper reaction sometimes also in response to the infusion - I call it "my mind on IVIG" - rather like it - since I feel so tired all the time - but yes, the first couple of days after an infusion I think your body is reacting to all those new little creatures running around in it!) Hang in there! |
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07-06-2007, 09:48 AM | #15 | |||
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Wise Elder
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Roxie:
Alan's nurse told me that a common side effect is "flu like symptoms". Alan felt like he got hit by a bus, when he came home from the hospital after his 5 infusions. Now when i say "hit by a bus", I just mean, he was exhausted. He had to lay down and recuperate. But once he started the home infusions, there was no more "hit by a bus'. He slept through them, and went to work the very next night as a night watchman. So in his case, initially, "he got hit by a bus", but after that, there was only one time when he got a fever the next day but we feel it was becasue they rushed through his infusions and did it in 3 hours instead of the 4 that was written on the label. Slow infusions are the way to go. Think of it this way, You now have the antibodies of 20,000 people running around in your body, bumping into each other, going, "oh, excuse me, didn't mean to bruise you". And the other antibody replies "oh you didn't did ya?? well, take that!!!, and the antibody punches the other antibody in the nose'. Well, your body is having antibodies trying to get along and sometimes, your body will react to all this activity and say "hey, hold on, let's get along". This is how I choose to view infusions. Not very medical, but I break it down to what my mind envisions these antibodies are doing in Alan's body. Then, after a time, all these antibodies settle down, and get to doing what their job is....... helping balance, boosting Alan's immune system, etc. So your little newcomers are just learning to get along with each other and with your original antibodies. Kind of like West Side Story, remember? The jets and the sharks . Well, WHEN YOU'RE A JET, YOU'RE A JET ALL THE WAY!!!!! Remember the movie!!!! You've got the Jets and the Sharks in your body. They'll come to a peace treat, don't worry about it. lol Melody
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