Hi everyone,

I'm 31, been dx'd w/CVID for about 10 years. I was switched to subcutaneous infusions a few years ago (before vivaglobin came on the market) b/c I don't have venous access (thanks to years of prednisone) and my central lines were getting massive infections. The protocol I was originally on was daily, so the amt of fluid was small (10ml) and I tolerated it well.

Well, I was just switched to vivaglobin and am delivering 80 ml's once a week. I did my first infusion a few days ago, and I am STILL very swollen at the sites and very bruised. I used four different sites in my stomach, and now I have these huge pockets and bruises still. After doing the subq for so many years my stomach has a lot of scar tissue under the surface and doesn't want to accomodate that much fluid. I don't know about trying other sites - do others use their legs or arms?

Anyway, is anyone else on the vivaglobin, and how does one cope w/the large amts of fluid infusing every week? Is it normal that three days after you can still see the swelling? I thought the whole thing was quite uncomfortable (far more so than the 10 ml I was infusing daily) and I also ended up getting a bit feverish.

Any help from others on this regimen would be so much appreciated!

Thanks
Laura

Hi Laura. I am 27 and was diagnosed with CVID in June of 3006. I started with IVIG but that didn't go well. So I switched to Vivaglobin. I switch each week between my arms and legs. I haven't built up the courage do try my abdomen. I have terrible site reactions. I usually put a heating pad or something similar on the area the whole time I am infusing. I also tried an ice pack but that did not help at all. I have the best luck with my left arm. I infuse 75 ML once a week into 4 sites. If you have any other questions, just let me know. My email is lindsay@holmes.net
Take care,
Lindsay, 27, Indiana, CVID - Vivaglobin

Hello Laura,
I am sorry to hear that you have problems with Vivaglobin.
I was diagnosed with CVID 11 years ago and at first I got intravenious infusions. Because I had great problems with my veins and bad reactions I tried as one of our first users here in Germany the subcutaneous treatment.

Since 6 years I am doing it by myself now, without problems.

I do not have Vivaglobin.

The swelling in my case needs only one, two hours. The redness as well. No other reactions so far.

Perhaps your body isn`t used to Vivaglobin and it needs a little bit time till your body is used to it. I needed more time for the infusion in the first time after changing the immunoglobulin product as well.

I need 100 mls a week, and give it into 5 sites. I use the stomach and the outsites of my tighs. In the stomach I have no problem, in the tighs it is not so comfortable (it hurts a little bit and the swelling is more than in the stomach). But it is less than in the beginning.

By the way: After doing the subcut treatment since 6 years I have no problems with the surface of my skin. I use a very thin needle (28 G I think) and take a new needle for every stick.

I wish you good luck! Please let me know if I can help you with anything.

Evi from Germany

Hi
I was diagosed 4 years ago- and used another brand of Sub Q until Viva was approved in the US. I've been on it for nearly 1 year- and have no problems with it at all. BUT, I infuse 10mL per day so that I won't have a reaction. I was using my tummy- but after scar tissue built up, I started going to the right and left side of tummy- the hip area.
there is less Sub Q fat there- and it actually makes it easier to slide needle right in. I do have friends who used hot pack afterward to reduce swelling, but I have found that if I gently massage the area WHILE the meds are going in - it disperses quicker and there is no lump when I'm finished- and I go fast.
Hope this helps
Carol

Carol Miletti
ckmiletti@msn.com

hi my name is erin and my son is a seven year old named josh. He has been on intervinious ig for a year and has had many side effects and problems with his viens and port so now he had to have the port removed and they refuse to put a new one in because of the reactions. He now has to start sub q and I am getting nervous. He had some reactions to th IV form such as joint pain, headaches, severe mood swings. He had a bunch of drugs before the treatment as protocal. He has very sensitive skin and now i am Worried about doing it this way. What are some reactions I should be aware of and dose anyone think that this is better than IV. Thanks for your time
Erin

My daughter who is eight started on the SQ vivaglobin nine months ago. I do her infusions at home. In the begining she did have some general body aches, redness and swelling at the insertion sites. We used a heating pad and this helped. Also in the begining she had nausea/vomiting and we started premedicating her with motrin and phenergan just prior to starting the infusions. This has helped, and we also run it in slower than the recommended time. Her total infusion time is approx. 3 hours for a total of 20ml in two seperate sites. She still has weeks where there is swelling and redness, but it is less than at first and also does not last as long some weeks only a few hours and other weeks maybe just 24 hours of swelling and tenderness. In the begining the swelling could last four-five days. However, we have seen a dramatic improvment in her infection rates. She has not needed any antibiotics nor has she been sick since we started the infusions. Her energy level and overall health is much improved. She is even going to school this year. I think that one advantage for the young children is that this can be done at home and they can feel more comfortable in their own setting than at an infusion center, also you have a little bit more flexability. My daugther was not on the IV form before so I don't have any comparison between the two, however everyone says that the side effects are less with the SQ type. I know that this is scary to switch to this type because it is new and my daughter is the only patient of her doctor's who is receiving this type, so there is not a lot of support except for sites like this. Good luck to you and your son.
Rebecca

I switched to Vivaglobin from IVig in September, and have mixed feelings. I think maybe I'm getting fewer infections, due to the weekly doses instead of once every 3 weeks, but I do have reactions. I get a headache, fatigue, body aches, fever. They are getting milder but are not gone. I generally go to bed right after and don't feel really well till late the next afternoon. The sites are not incredibly painful. I use four of them, and they seem to subside after about 36 hours. But I don't have a lot of body fat, so it's hard to find good spots to do it. And lately the sites have begun to leak, even while the needles are still in. Any suggestions? Sounds like some of you administer the med in more frewquent intervals to lessen the symptoms. I get 50 ml once a week. Would it be reasonable to ask to split it up?

Thanks for the feedback.

Laura

Hi,

I get Vivaglobin Sub-q 63ml/wk. I also get leaking at the insertion sites while infusing. My nurse has helped me to see that lying prone (down on back) takes pressure off of abdominal infusion sites and helps the IG saturate the area around the needle insertion WITHOUT leaking.

There are trade offs to everything. Personally,, I'd rather be receiving Vivaglobin at home sub-q, than doing IVIG in a "Money-Hungry" passionless infusion room in a hospital or oncology center. As far as side effects, well,, mine are pretty minimal,, and if I pre-treat with 50mg. Benedryl and a Lortab,, I am good to go. Everything in life is manageable with a little forethought and imagination.

Good Luck

Keeliey O'Hara

Laura,
I have been using Vivaglobin for quite some time. I have swelling at the entry site as well as slight bruising. The site resembles an orange peel and is not uncommon. In addition, I started using my thighs as a point of entry as the skin on my stomach was becoming hard. Not unusual either. Ask your physician to write a script for a numbing product like lidocain. This product made the entire sub q process a breeze. It's a must if you are treating yourself!!!! Fluid retention is another problem, but then so is being sick all of the time. So, I hear you....just hang in there.
Lyn

The company providing you with your Vivaglobin should have a nurse with whom you can speak. She/He may be able to come to your home and assess your sites and show you alternatives. You can call the company directly. There are alternate sites from the abdomen.