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Old 01-05-2008, 05:33 PM
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default Pono - you have really

done your homework! And, I bet, worked super hard to get to this point....

OK here's the basics I'd posted ages ago...I believe you've read them all, but refreshers never hurt...
http://neurotalk.psychcentral.com/sh...highlight=IVIG

I do hope that Melody and Roxie can provide the threads discussing their intro's into IG-land....Mel's I believe was about Dec/Jan last year and forward. Roxies was spring sometime and forward. I must be going brain-dead or something in not finding them?
Kmeb gave you very good advice about reactions...These are very important things to watch out for...and as for reactions right off? Rarely...My last real reaction occurred half-way thru my second day in a hospital setting. I now have infusions at home....If you get to the hospital on your own steam...and are pre-medicated- it's a muzzy area where YOU are going to have to learn how well you cope after infusions! I really get the shivvers now, wondering HOW EVER did I get home intact?
Killer, migraine-like headaches and flu-like stuff -bone aches-[worse than with the PNetc.], some nausea and well a similar issue at the 'anterior' end do often happpen. Infusion rates can and do affect how much headache you can get...that's why your starter or 'loading' infusion is going to be looooonnnng! All of it mite be interesting at first? It gets very dull very fast. If you are in a hospital, bring a tote bag of comfy nibbles with you-I chose a banana or a fruit cup and some coffee or juice for after the bloodwork and like hook up. Also good reading materials-hospitals tend to have a TV but some folks in any given IG area may want to watch something you truly hate. Some folks can test your patience on this, I assure you. Mostly, folks b eing infused for a whole slew of reasons, usually after pre-meds and start up...just doze the time away.
As for IF/WHEN you will know and/or feel wonderful? Well, stats for CIDP and many other conditions indicate tht 40-60% of the patients 'respond' detail as to 'degree' is never articulated. It doesn't always kick in rite away tho. Remember that those supplemental anti-bodies are just that, and that they are probably going to have a sort of 'discussion' with your ill-behaving ones or something...That's why you'll be watched very closely at first. I felt better at the third day of my first four-day infusion sessions. Pain reduced about 30% and the ability to walk any distance well, wow! After it kicked in, I walked more in the next two days than I had walked in MONTHS! But, it all depends on the brand, the dose and what all you need and can tolerate. I have to say I just love my 'nanobots' going to work monthly! I would be one very growly camper if I didn't get them anymore for sure. Take/keep a note pad, and try to describe the changes You Think You feel, and filter out those most important to relay to your doc...Even little things like giong down a 1/2 notch in the pain level is truly something important... Hang in there and keep faith that all your hard work and the infusions will really help - 's! - j
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