That sounds like my very first infusion. I only made it through one bottle because of side effects. Sorry it was so rough.

I haven't started anything yet as I'm new to all this, but I have done my homework.. I am supposed to start the Sub Q in 2 weeks. Apparently it is similiar to an insulin pump. (small )and my Doctor says I can move around and whatever while it is infusing... I will have 4 sub Q needles ( very small) that I will have to put in my stomach and this will infuse in about 2 hours. Everything that I have read and that he has told me, is that it has less side effects. The first one I go to the DR. office to get and the 2nd one a nurse will come to my house and help me with it. After that I can give them to myself every week. If I dont have any side effects then I think Il be able to accept this illness alot easier. I am hoping I feel better soon and have more energy. Do you usuallly have more energy after you start the tx? I just feel like I am dying a slow death. I hope this feeling will go away. I don't think that you have to be a candidate. I think anyone can get it. They are going to start me on Hyverta? does that sound right? I cant quite remember but it is the new Vivaglobulin with less side effects. Sorry I cant remember, Im at work and have been awake over 24 hours.,. Good Luck Stimpy

thanks dixonrn. Oh, o.k. so THATS how it works. You know its funny, I have been getting IVIG for about 15 years of Gammaguard, and I HAVE NEVER had a reaction. Well my doctors office shut down, his partners went their separate ways (crazy situation) So I went about 1-1/2 months without my Gammaguard. I was getting so tired. So yesterday I went in. The doctor was doing everything HIMSELF. Because all the staff was gone, his wife was helping out. He is a oncologist/hematologist. I got there at 8:00 a.m., the tubing wasn't delivered until 10:15, so I finally got hooked up around 10:30, so they get the first bottle in me, no problem, so I get up to go to the bathroom and I come back, and my chest is kinda feeling like what your lungs would feel like on a real SMOGGY day. Just kinda funky. I honestly don't know if I was having some sort of anxiety attack or what. Because I started coughing and having anxiety. I was so embarrassed. So the doctor kept saying "are you o.k." and I didn't want to overreact, so I just said it was probably anxiety. He listed to my lungs and said I had some wheezing. So he made me take benadryl. Crap! At this point, I just wanted to get up and BOLT!!!! I was knocked out. They tried for the next 45 minutes to get the next bottle in me without success BECAUSE THE MEDICINE IS THICK AND MAKES ALOT OF AIRBUBBLES. This is ALWAYS a problem. This is one of many gripes. Sometimes they can't get the I.V. needle in. Sometimes they blow a vein. ALOT of the time the pump beeps and beeps forever and they spend an extra hour trying to make it work. This has been a common experience for me. So I asked the doctor about SubQ and he said he would look into it. But you know he is going through a major career crisis right now so I don't want to be the last straw on the camels back. Oh well, if my chest gets "weird" I'll just pull out my 2 year old inhalers. Hope they are still good.

Stimpy,

There is a video on the Vivaglobin website for self administering SubQ. The link is below. Tomorrow will be my 10th SubQ infusion and it gets easier every time. At first I had site reactions and headaches, then I realized it is important to clamp the tubing before removing the needles and I took Tylenol before I started ... since then I started doing that, I have had little to no side effects. good luck!

http://www.vivaglobin.com/patient/SelfAdministrationVideo.aspx

PrincessButtercup,

I don't know what this group would be like without your support - you are truly awesome.

Dixon,

I think you are right on the name for the new SubQ treatment, not sure when they will switch me. vivaglobin seems to be working well for me, if Hyverta is better, you should be feeling great soon. I actually do my treatment while I work (from home), you can walk around with it, but I would not recommend too much activity while using it, unless you can cover the tubes well enough that they do not get hooked on anything while walking around... ouch. Good luck to you!

-Mike

Wow! Thanks Mike! Sometimes I worry that I'm annoying, but it's good to know that my comments are appreciated. :)

I see my doctor today, and along with my plan to return to work I want to discuss SubQ with her. One of our new members here told me of his positive experiences with Hizentra, and I'm excited to try it. There are some advantages to it over Vivaglobulin in that you can administer it with fewer needles and there are fewer side-effects. When I first watched the video at the Vivaglobulin website (same company makes both products), I got kind of overwhelmed because it seems to be so much work for someone who's so tired, but apparently they overemphasize some of the precautions a bit. He said it's convenient to just sit and read a book or watch a TV show while getting the treatment, I've even heard that some people do it at work! This would definitely fit into my lifestyle better. :)

Just like physicians get extra training and become specialist, like allergy or internal medicine, nurses do too. There are dozens of nurse specialist designations. One of them is infusion nursing. You might try and find an infusion center that employs them.

Mark, in a perfect world that would be great, but I like you, have been doing this for a LONG TIME. I've had the best, I've had the worst. But one common thread with it all is the medicine. Seems like at just about every infusion, the nurses get frustrated, irritated because the medicine is thick and produces alot of airbubbles which causes the pump to beep constantly. I have had the BEST oncology infusion nurses just about snap. That is why I am going to investigate this SubQ, keep hearing about it. That way I can have the CONTROL. It's tiresome to sit once a month and watch everybody get frustrated. Just gonna try, if it doesn't work, I will go back to the drawing board. Stimpy

Oh yeah, great, because of the lack of infusion, I now have a wonderful chest infection.

I just found this link aboaut Hizentra: http://www.hizentra.com/

I have done IVIG gammagard and SubQ and now I do none of the above because I could not take the panic attacks and the worry anymore tho if your going to do one the SubQ might be the way to go I guess they can bring it to your house through a home health agency its once a week but only a hour to infuse and you can walk around the house and do stuff your not limited to just sitting in a chair. just call your local home health places and see if they carry it I was lucky cause I live in Florida and was able to go to all children's hospital to receive my treatment I think thats the only reason I did them for so long the people were wonderful I still miss them. I hope you can find the right way to go its all hard to deal with.

Weird...I just found out that the company that puts out IG Living (the magazine for us) also provides home nursing care including IVIG administration. Here's a link for those of you who're interested: http://nufactor.com/pages/ig.html

p.s. I know nothing about this company other than that they put the magazine out.

I have posted before about my tx. And after reading about your difficult time with your treatment I feel incredibly blessed that I have never had that difficult of a time. I am currently doing SUBQ (when I say I am I mean I take it my hubby hooks me up) I love it. I have had really no side effects. Other than itching and redness at the sight. In the beginning. Now I take generic zrytec hook it up and then infuse and in 2 hrs we are done and I feel tons better. It works with my lifestyle, it works because the side effects are less and it works because TO ME the more control a person has over there care the better. Although I miss my girls at the hospital. I had been with them for yrs. And now I am still great friends with them. Anyways, I took my sub q with me on vacation to DC. It went off without a hitch. I am very pleased. I hope you find that it works for you. I think you might like it alot better than ivig.

Thanks, I just got a call from my doctors office and they are looking into the sub-Q. Like I said, I have been doing this for 15 years, and have tolerated what I considered to be "normal" bothersome difficulties, getting ivig, but now I am going to be open minded and what to try somthing else. I will let you all know how it goes, as soon as I get my first treatment. Stimpy