Recently diagnosed, looking forward to first IVIG treatment

[vegematic]

Hello all, I was diagnosed a couple months ago with CVID with immunoglobulins at undetectable levels. It's been kind of a long process to get diagnosed, recheck the numbers, and get insurance and preliminary blood work in order so that I can begin treatment. Tomorrow will be my first IVIG. My major presentation is repeated respiratory infections and bladder infections. I have not (yet) suffered from fatigue and have maintained a demanding job and a very active lifestyle, much to my doctor's surprise. From talking to my pulmonologist and my immunologist and from what I've read since being diagnosed, I think I've had this condition for most of my life. 
Cheers,
nancy

[s162216]

Hi Nancy and welcome to the forum,

Its great that you've managed to get a diagnosis, and also access to IVIG which will very likely improve your life immensely as you won't suffer from as many infections. Good luck with tomorrow, and I hope it goes well. Keep well hydrated before the infusion as that can help prevent things like headaches which some people get, but other than than that all I can say is just go with it and you'll soon get used to the infusions (I never thought I would, yet its been nearly 4 years now and their just a routine part of my life now!).

You will have had CVID for all of your life as its genetic in origin. This doesn't mean however that you've had it passed on from your parents as CVID rarely runs in families, and most cases are thought to be the result of new genetic mutations. Most with CVID don't show any symptoms however for many years - the reasons for which is unknown - and then suddenly go downhill which is when it tends to be detected. Some patients do suffer from birth, and this reflects the nature of CVID. Its Common as its the most frequent immunodeficiency condition (which are rare enough - only about 1 in 20,000 to 50,000 have CVID!), Variable as the presentation differs so much in ever patient, and it obviously causes ImmunoDeficiency which results in increased or recurrent infections. 

I don't know if you've noticed, but we have a ''PID Information Bank" on the forum (just beneath the 'Newly Diagnosed Lounge') which contains sheets we have written giving information on various PID conditions, treatments etc and you might find these useful.  Theres one on CVID, as well as a 'What is Primary Immunodeficiency?' one for more general information. You may also find the ''Immunoglobulin G Replacement Therapy" and 'Intravenous Immunoglobulin G' ones useful as well (The IVIG one contains more specific information whilst the first one gives more general information on the benefits etc of IgG replacement.

Good luck tomorrow, and If you have any questions then feel free to ask, we are all here to help!  

Sam (Admin)

[glowing]

Hi Nancy and welcome to the forum. Just want to wish you good luck with your first IVIG.

Glo

[vegematic]

Thanks Glo and Sam. It's no-go for today as we had a dump of heavy snow overnight. Rescheduled for tomorrow morning.
-nancy

[s162216]

Thats a shame, I hope that it goes well tomorrow!

Sam

[glowing]

Oh dear! Good luck for tomorrow then.

Glo

[vegematic]

Got my first treatment this morning. So far, so good. It took four hours to get it all in. I pounded fluids all morning and I'm continuing to hydrate in hopes of staying free of any side effects. I really don't want that headache that I've heard about.
-nancy

[glowing]

Good for you. Don't forget to eat as well.

Glo

[s162216]

Its great that it went so well for you, and I really hope that the IVIG is helpful (be mindful though it can take a few months of infusions for the effects to become apparent)!

Keeping hydrated can help with minor side effects, headaches are fairly common, but not everyone gets them. Another tip can be that most possible minor side effects (e.g headaches feeling cold, mild nausea etc) can usually be reduced/avoided by lowering the infusion rate. As so if you should experience anything like that during/after an infusion that then it might be a good idea to mention it to your immunology nurse/doctor as everyone is able to tolerate different infusion rates and it can take a while to find your one.

Sam

[vegematic]

Five days out from the first treatment and I only had very minimal side effects later in the afternoon of treatment day. Mostly this meant taking a nap but I had a very minor feeling of fighting off infection. It was gone after three hours or so. I was able to hike the next morning. Thanks to both of you for the support.
-nancy

[s162216]

Happy to help! Its quite common to feel tired afterwards, I usually have a few hours of sleep shortly after; most people who have IVIG go to one extreme or the other after an infusion. Some (like me) feel tired, but others oddly feel like their so full of energy that they have to do something with it!

Hope that things continue to go so well,

Sam

[glowing]

That's great. Fingers crossed it stays that way.

Glo