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potsyturvy

Question For Potsies With Pid Or Who Use Igg Treatment

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I was diagnosed with Common Variable Immunodeficiency this year and have been doing IVIG for about 6 months. I have to have someone drive me over an hour away to my Immunologist's to have it done because the hospital here will not order the right medicine for me (the issues with living in a small town). I can't drive myself because of the pre-meds and it's becoming a pain. I had my last IVIG treatment today and am switching to SubQ in two weeks, so I can do it myself at home. One of my and my Cardiologist's concerns is that I will not get blood volume increase doing SubQ and won't feel as good as I have felt on IV treatment. Any thoughts on this? I know the IgG itself should be more stable on the SubQ, but I am hoping that my POTS symptoms don't get worse, since it will no longer be injected into a vein and my blood volume won't increase. I don't know if that makes sense or not, but if anyone has done IVIG treatment and switched to SubQ and could tell me how it affected their POTS (if it did at all), it'd be great to know! Thanks!

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Hi pt,

I'm on ivig and also went to an infusion center. I drove myself, they gave me iv benedryl when I got there and it was out of my system by the time I left. It burned going in though. I am now getting my infusions in my home through home healthcare through my insurance company. It is so much less stressful then the drive and all. Have you looked into that yet?

I can't speak to the subq, I decided I didn't want to have to do it every week and I have problems poking myself with just a glucose moniter. I do know though that ivig can make the blood thicker, but I don't know anything about blood volume.

There is a cvid support group on daily strength forum. You might be able to pose the question there.

Where you getting a lot of infections before they diagnosed you with cvid?

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