Hi, I'm 39, and I was diagnosed with CVID 9 years ago, and have been receiving IVIG every 4 weeks since then. My problem is that I have terrible veins (tiny and very hidden!). I have only one "good" vein available. All the nurses call it "Old Faithful", but I don't know how much longer it will last, for it is so full of scar tissue. In the beginning, my doctor suggested a port, but then when I asked him about the risk of infection with it, he agreed that maybe it would not be a good idea for me to have one. We haven't discussed it since then, and I really don't even want to think about it until I HAVE to!

I'm just curious --- how many with CVID have a port? And have you had any problems with infection because of the port? What are your experiences?
Any feedback would be greatly appreciated. Thanks!

I have the same problem. On a common sense basis, ports look like a bad idea for people who are vulnerable to infection. I am looking into subcutaneous infusions. For people who have just one infusion a month, the treatment schedule can be revised to receive 1/4 the dose each week. The procedure is then to proportion the dose among several sites in the body so that no one location gets loaded with more liquid than it can absorb. One of my doctors told me Gamunex can be prepared for subcutaneous infusion. There is a newly FDA-approved subcutaneous Ig in the U.S., but when I checked in April it was not yet available for sale. An advantage of subcutaneous infusions is that patients can learn to do them themselves at home, which reduces the cost and time away from work, etc. Good luck...

ankaw

I have the same problem. On a common sense basis, ports look like a bad idea for people who are vulnerable to infection. I am looking into subcutaneous infusions. For people who have just one infusion a month, the treatment schedule can be revised to receive 1/4 the dose each week. The procedure is then to proportion the dose among several sites in the body so that no one location gets loaded with more liquid than it can absorb. One of my doctors told me Gamunex can be prepared for subcutaneous infusion. There is a newly FDA-approved subcutaneous Ig in the U.S., but when I checked in April it was not yet available for sale. An advantage of subcutaneous infusions is that patients can learn to do them themselves at home, which reduces the cost and time away from work, etc. Good luck...

ankaw

Hi there, my name is Alan and I hail from sunny or sometimes very cloudy West Yorkshire in England. I have had CVID for over 2 years now and must say that the treatment I have been recieving here in the UK has been fantastic. I have been using subcutaneous infusions now for over a year and everything has been ok. At first my levels went down a little but we played around with the dosage and now everything is ok. I do it myself twice a week and each infusion lasts just over an hour. It has been great being able to relax in the surroundings of my home and to be able to do anything I want while I am doing my treatment. I would highly recommend it but would also say that it is probably not everyone's cup of tea

Hello,
It is a little bit late reaction but perhaps you can use it.
I have a 9 year old son who has a port-a-cath for 5 years now.
He also has very difficult veins and was very afraid for the injections.Since he has his port he isn't afraid anymore.
It works super! He has never had an infection or any problems with it.
He now has to get a new one but that is because he has become a lot bigger.I have only positive experience with a port-a-cath and I would recommend it !

I've been using subcuteneous infusions for almost two years now. I found it easier, especially trying to cut back on time missed from work. I used to get IVIG once a month, but had terrible migraines from it, and aside from being home the day my home care nurse would come out to do the four to five hour infusion, I was usually laid up 2-3 days after. Since being on the subcuteneous infusions, I can do my treatments at work, twice a week, each treatment lasting eight hours. Although I still get sick a great deal, I feel freed up since being on the sub -q infusions.

Hi

my son has been diagnosed with x-linked hypogammaglobulinaemia and has just had his first Ivig (two days ago). He appears to have reacted well to it but I guess time will tell. It is hard to see the true reaction as he is only 1. I have been advised that he will have another IVig on 24th Oct, then he will move on to sub-Q once weekly.

How come you do it twice weekly Lisab and Alan?