Group, After an issue this past Friday, I only got one day's dose(1/2) of Prvigen. It seemed that my nurse forgot to turn the IV on, so we sped up the rate a little faster than we normally do. I ended up getting some red, raised welts on my arm, just above the IV. They gave me extra Solumedrol and then moved it to a vein on my other other arm. The whole thing took 8 hours instead of the normal 5. The next day I had reddish flushing in my arms, kind of in the shape of my veins above the IV locations on both arms. So the nurses did not want to give me the 2nd treatment and sent me home. It went away by the next day and I then followed up with my Doctor the following Monday. He was kind of leaning toward waiting until the next month and just dropping the other half of the treatment, but said it was up to me. I asked that we go ahead and get the other 1/2 of the treatment. I figured, "If it's not broke, don't fix it"! IVIG has been working for almost two years now..... At this time he said - " let's try the Octagam instead of Privigen. Looks like you are having a slight reaction to the Privigen and we just had some recent seminars on the Octagam, and the Hospital is looking to switch". Sounds like it is less expensive as well. I think I saw one or two people that are on the Octagam for of IVIG? Any thoughts from anyone on Octagam ? I think the speeding up of the treatment may have caused the biggest part of the issue vs. the Privigen...but who knows? Also, finding veins are never easy for the nurses. They are encouraging a port, especially after this last situation? Any thoughts on Ports? Thanks, Barney.

Hi Barney. My husband has a port, and he is very happy that he got it. Here is his list of pros and cons. Pro: - less getting poked with needles in the veins, and less need for IVs (the port sits under the skin, so nurses will still need to poke through that to access the port, but way better than wrecking your veins) - If a properly certified nurse is around, the port can also be used for blood draws (unless it's being used for IVIG) Cons - They create a raised bump under the skin, and that creeps some people out. However, they are hidden by your shirt. - It was a bit itchy when he first got it, but he got used to it. - In our province, a nurse needs a special certification to access the port. So, if no certified nurses are around, an IV in the vein must be done instead. Our hospital has been driven to certify as many nurses as possible, so it doesn't present a big issue. However, lab services are not permitted to access port ever. So if you get blood taken in a lab service, you may be looking at a vein poke. Rules may differ where you are. You may want to ask about certifications needed in your area, and the availability of certified nurses. Hope this helps!

Thanks - it does help. I will ask about the certifications here in the States. I never heard that before, as all the nurses seem to recommend the ports. Makes their lives easier as well. Barney

Hello, I too had the port for 2 1/2 years. It truly was a great access for me. The SCLS just destroyed my veins. When I would have an attack it was terrible just trying to start IV. The problem with me was that last year my head started swelling and the veins in my chest looked as if they were going to pop!!! I went to doctor, after numerous tests, they finally sent me to vascular surgery where they discovered my main vein in chest had scar tissue because of port! At first they thought blood clot!! Thank God not that! He ballooned vein as well as veins in each arm, and took port out!! They never want me to have another! Lucky for me I had already received 8 months of IVIG fusions which help to strengthen my veins. I said I wanted to try IV so at my hospital they have a team with an ultra sound machine, they come in and locate a deep vein so it will hold and place and I was able to receive fusion. We tried to keep in for second day fusion but my vein would not let. I am at least very thankful at this point I can still do IV, but new stick each time! I just hope and pray this can continue or they were talking about placement in foot or head???? Yeck! Good luck to you and I hope and pray you will have great success with your port! They are nice, but a pain as well:) Good luck to all of us and blessings for good health!!!

Nolan has had a port for almost five years. We have not had any major problems with it. It has been so great for his monthly IVIG treatments. I would recommend it.

Thanks for the post Nwbsaw. Barney