Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
My first IVIg is scheduled bright and early on Thursday of this week. I'm going to be able to do it "at home" - so I'm going to set up at my parent's house. I'll have good company (and cookies with any luck ;-)
I'd be lying if I said I wasn't nervous...but I'm also hopeful that I am on the way to feeling much better.
I'd be lying if I said I wasn't nervous...but I'm also hopeful that I am on the way to feeling much better.
i am sure you will do GREAT!
each increase i have i usually have the flu like symptoms...go slow and hydrate...i forgot ....are you seeing harry schroeder at UAB???? if so he is very proactive at getting his patients at the optimal level from the start.... i still do my infusions with my hemotogist, but schroeder oversees everything and my hemo doc defers to schroeder's recommendations....he also works with my rheumo doc and oversees all my tx for sjogren's he is GREAT! i think i remember you saying you see him???? so many docs dont get their patients at the optimal dosage..since seeing him my igg sub class 1 stays around 1100....and since i take 10 mg predisone, plaqunil, and lefludaminde and orenica infusions (all for sjogren's) that is quite an accomplishment to keep my levels up with all the immune suppressing drugs i have to take to keep the sjogren's in check....
you will do fine but you may have flu like symptoms the first few times until your body adjusts....but i am sure you will do great! keep us posted
- feeling better, being less sick
- having more energy
- increased desire to eat brains
- general overall happiness
You'll do great. ;)
vortek - thank you so much for that. i'd say i am overdue for a little energy and happiness. i hear such infusion horror stories in some of the other groups online. it's nice to be reminded of the benefits....even if i will have try somewhat to suppress the urge to eat brains when at the office :-D
in 2010 i got whooping cough from a student (i was a 4th grade teacher for 17 yrs) and it threw me into a massive cvid flare and sjogren's flare...i wasnt even able to walk on my own for 6 mths it took almost a yr before i could even drive... i had to have someone drive me because i couldnt walk in on my own when i got somewhere.....
my rheumo and i were talking my last visit 2 wks ago and she said to never leave doc harry (as if i ever would!!) he has really worked with her to get my sjogren's under control.....he has worked with my hemo doc and my internist closely too without all of them working together i wouldnt be where i am today..... at one pt i wasnt able to even walk down the hall to the bathroom without holding onto the wall..i couldnt take a shower i had to take baths i wasnt able to stand long enough to take a shower...talking on the phone wasnt do able i didnt have enough breath to talk...without my sister and husband i wouldnt have been able to get out of the house they had to help me walk...even a simple trip to the store required a 2 hr nap...now i have more good days...not excatly where i want to be yet but i am slowly but surely getting there....it will be 3 yrs in jan and i have come a LONG way.....dr schroeder was the key he put all the pieces of the puzzle together along with all the info from my hemo, rhuemo, and internist and they came up with a plan of action that is giving me my life back.....i still am not to the point i could work daily...but i am so grateful for the progress i have made i dont worry about what i cant do and i concentrate on what i can do....
so hang in there and as vortex says the optimal treatment will get you to a much better place...it is def worth it!
Took about three and a half hours for 40g...but I have no headache, no nausea...nothing is itchy or achy. Blood pressure stayed steady at 104/72.
This is the first IV I've ever had where there was zero pain involved! Ordinarily, I am the veinless wonder...but I thought to ask them to toss in some tiny needles into my package if they had some to spare. Nurse took one look at my hands and told me I had great veins. That's what I like to hear! :-D All in all I'd say it's a very good day - this went far better than I expected.....(except for this crazy urge to eat brains now... ;-)
I'm still chugging water. The only pre-meds I had were two tylenol. I definitely feel 'different' somehow. I can almost imagine that I am breathing better. Seriously...it's like I took a sudafed or something.
I'll probably get a nap - haven't slept much this week. It is so great to be on the road to feeling much better! What a relief.
When you can actually take deep breaths without wheezing - it makes all the difference in the world in getting a good night's rest.
No telling what else is getting better as we speak.
Wow!