Newbie a lil apprehensive

[me]

Hi im new to this got diagnosed with severe cvid i have no immune system at all. This is all new and scary to me because 6mo. ago i was healthy and no problems and got sick in december and went downhill quick now iam sore all the time have bronchiectstasis and cant even work start subq today hizentra and its only paid through year thankgoodness for cobra insurance.

[me]

Oh yeah help on any info y'all can give this has got me a lil anxious and my family thinks its no big deal that im just a hypochondriac or something

[mali42]

Hi and welcome,
I had no immune system when i was first diagnosed but unlike you mine came about over many years,
CVID is so rare that families just don't get it and it can take a while for them to start to understand, I gave my mum a small booklet explaining and after she had read it came to realize i wasn't attention seeking but i have to admit i hid being ill whenever possible.

It does take some getting used to and once your on an established treatment you will feel so much better. i know i am putting the mockers on it but i haven't had an infection this year so far.

I hope you start to feel better soon.
Malcolm

[me]

Thanks Malcolm
Just got done with subq treatment a lil bit ago. Didn't go bad other than really gassy and a little puny feeling. And thats right about family only one that really understands is my fiance because she sees it everyday
And my cousin because shes a biomedical engineer. But taking it one day at a time
Patrick
and my

[john]

Hiya (shall we call you Patrick or ME?),.....anyhow
I have been missing that immune system for so long now I honestly can't remember life when I was naturally healthy!
I say "naturally", because thanks to my infusions of Ig I AM healthy, in a strange sort of way, and it works so well that most of our friends and even family seem to forget that this state has to be maintained!
It's no big deal really, whichever way you get your antibodies, and once you've stabilised on that you can take control of antibiotics etc. that we all need when we get breakthrough infections, and then you're in control!!!
Welcome to our happy band of folks from around the world who "get" what you're about 'cos they've "got" what you've got!!
Ask anything, anytime and someone will answer you, even if it's just to say "hello", and point you in the right direction for help.
It's great to meet new people with PID, so don't be a stranger now that you've found us!!

[me]

Thanks john will do

[mali42]

Hi Patrick
I'm not sure what side effects people have with sub-cut, but i always feel washed out on infusion days and sometimes it goes into the next one but nothing bad so I generally take it easy,

A few of us have side effects when first starting out and the more we get used to the magic juice the less they become.
Malcolm

[me]

I noticed that myself last day and a half. Had to take a pain med yesterday because my back was killing me did to much yesterday when i already felt puny