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.

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Switching to Sub-Q

laceyloo2
laceyloo2

hello everyone, 


I'm reaching out in hope that maybe some of you can help me feel more comforted about this. 


I have been using IVIG for over five years, I have a port my sister is my infusion nurse, and we do it in my home every three weeks. I've become very comfortable with this routine. 


Recently the specialty pharmacy that I have always used, had continuously let us down and had either not sent the medication to arrive for us to do the infusion when we scheduled and that has caused some health issues to arise as well. 


I go to see my immuno doc on Monday to discuss our plan of action to change things to make this all better. What I am worried about is that I know he is going to make a big push towards switching to Sub-Q. 


The entire idea of the sub-q infusions freaks me out so much. I know this all may sound so silly and vein but, I am worried what it's going to do to my skin and appearance of my body. It also just sounds terribly uncomfortable. I just don't know what the right thing to do is. 


Has anyone here made the switch? If so did you have any reactions? Have you noticed a change in any way? And what does it to do your skin? Do you have scarring or is it painful or uncomfortable? 


Any answers or suggestions of stuff to discuss with my doc would be greatly appreciated. 


Thanks for listening!


Lacey

Catlover25
Catlover25
Hi i have the injections in my stomach every week you can't tell unless someone looks really close. when i first started i used to have an egg shaped lump when i did the injections but now i don't as my body has got used to them. i have been on these injections since i was diagnosed in 2012 so around 5 years and the only problems i have had are that sometimes one side will leak but other than that they are fine. i hope this helps.
Dianabelle
Dianabelle
Hi, I can put your mind at ease,i have been doing subq hyquvia and now hyzentra for 8 months and its not that bad. I never had iv because I have terrible veins. Its very small needles,im sure you will be fine, best of luck to you:)
MissSophie
MissSophie
Hi Lacey,
I did Hizentra for about five months and the first 3 months had no reaction then all of a sudden I started to have a systemic allergic reaction within 5 minutes of starting it. I would swell, retaining up to 13 lbs & going into CHF. Once my face swelled up the next day & was very painful. That took several days to go down with taking Benadryl nonstop for a week. Dr said no more because the next time I could go into Anaphylaxis. But with me I have ended up having severe reactions to other IVIG also. Going to Sansum Clinic Tuesday to see if they can figure it out.

Hope it works out for you if you decide to use it.

Cheryl
raleanne
raleanne
Hi Lacey . I did Sub-Q Hizentra prior to gammunex .Giving myself needles was relatively painless but Like MissSophie I had so many reactions that it was stopped. I now have a port and do Gammunex in a hospital setting . I liked the freedom of the Sub-Q to do it on my own time and I liked ( If it had worked) that my levels would have be more on an even keel than by port infusion topping up and then bottoming out at the end of three weeks . So both have its advantages and disadvantages . Discuss with your doctors and ∂o what makes you feel good health wise . There is a u tube video on giving yourself sub -Q treatments . You may find that helpful . Best wishes .