Common Variable Immunodeficiency Support Group

Hey TealOrca,
I'm not sure if this is the same, but I notice an ebb and flow in my moods and reactions to the treatments. There are times when Im more than happy to do it, and others where I down right resent it. Ive also seen times where I get scared... This one perplexes me the most. I've done it for a few months now, no bad reactions or anything, but all of a sudden I'll start shaking when I'm taking the lids off the bottles and starting to fill the syringe, I'll actually get butterflies in my stomach.

I hate the Benadryl also. I've always been really sensitive to allergy meds. I was wondering if I could try without taking it. I already only take half the dose and it knocks me out completely. It's a race to take the Benadryl, get ready and get the needles in before I fall asleep. My husband has to wake me up and help me take the needles out when it's done. I barely remember it. If I take the full dose I am in a complete clouded mind fog the next day... Coma state like you say. That's why I started taking only half or else I can't function.

I get edgy when all of a sudden I can't get the last needle in! They all just slide in easyily and without pain, and then all of a sudden there's that one that no matter where you go it seems to hurt. Do you know what I'm talking about? I'll sometimes have a rose patch on my skin where I try different spots to see where I can get the needle in, but its like the needles five times bigger than it is and wont go in and i imagine its going in a vein or something. This may just be me.... Eventually I just take a deep breath and do it but I've worked myself up and feel really stupid because I can see that the needle is soooo little and I'm sooo much bigger than it. Haha.
Anyways, hope this helps.

I get...short tempered lol so I guess that would qualify as edgy. I attribute it to the fatigue I feel when I infuse/day of infusion. Normally I try to go on, cooking or doing dishes or whatever while infusing, but lately been more of a resting period for me. Normally I infuse at night and now I feel like the whole scig is a huge pain in the a$$...i put it off for several days and do it mid-day now. Could be why I never noticed before so I think I need to switch back to nights again.

It has happened a couple of times to me. Think that it was the benedryl. I have started taking zyrtec and have not had that happen to me since. From what I can gather Benedryl can make some people hyper/edgy.

Tina,
my nurse advocate suggested that very thing to me today when she called about my supply order. She actually suggested Zantac which has a strong histamine in it. She said try to go without the Benedryl next week, and if I do okay, not to premed anymore, but if I get itchy then try a Zantac.

ZZZappergirl I did fine in the beginning, but then about 10 weeks in, I started to have these mini panic attacks, broke out in a sweat the whole deal. I so get what you are saying. I started to pray through the time when I was inserting the needles, and that helped tremendously.

Kelli, I am waaay behind the game compared to you--you've been at this for a while now. I talked to a Hizentra advocate/counselor the other day, and she's been doing IG therapy for 20 years. SubQ for the better part of the last ten I think she said. I try not to look down the road that long...maybe they'll come up with something better?

SO glad I have you guys to panic with and talk to. No one else gets this like you all do. I get really tired of people saying, "Well, it could be worse." if I do get the courage to share. Comparing my issues to someone else's has NEVER helped me. Of course it could be worse...who wants to even contemplate THAT? I just need someone to go...Yeah...that sucks. I hope things get better for you--and you guys so do that! Thanks!

Omg! TealOrca, you made me laugh so hard, I know the feeling of someone saying, "it could be worse." Followed by "everything happens for a reason." While I truly believe that, it doesn't actually help while I'm in crisis mode.

I'm glad you brought this up, I learn so much! I'm going to try the Zantac also. Once I thought about it, drugs that usually make people edgy and hyper, always knock me out.
Thanks.

Thanks for putting this here. While I don't get edgy from the treatment itself, the scig in general upsets me. I get those moments of panic when I look from the needle to my skin and back. I also think about doing this for years in the future and it's hard to face. Sometimes I think to myself that it could be worse, but you're right, that doesn't do much. I am getting some help to try to deal with it, but this is more difficult than I thought it would be.

I'm going to try benedryl free tomorrow night (er..Tuesday) and see if that helps..or hinders how I feel. I'll let you know...

Not taking the Benedryl helped a ton. No chills or bad reactions that I can see. A bit more of a headache, in which I forced more fluids, and that seemed to take care of it. Still feel tired (fell asleep during treatment), but don't feel out of control or edgy, just fatigued. Much improved.

> Does anyone get edgy during treatment?


They installed a new TV in the medical day unit at the hospital, where I get IVIG. And the last time I was there, an older lady changed the channel ... she turned it away form the news ... to ... Wheel of Fortune.

This made me edgy.

:)