Hi Anne, sorry about answering so late. Things are CRAZY right now. The new treatments are going well. I don’t even think about it anymore, it’s just part of life. How are things going with you? I hope you’re healthy and safe! Talk with you soon, Jack P.S. I’m going to see if I can get get activity sent to my phone so I can answer in a more timely manner!
I’m finding this thread interesting as my Infusion nurses have recently been mentioning vein scarring as a result of my four weekly IVIG (for about six years now). I am considering requesting that a port being ‘installed’. However, subcutaneous Hizentra sounds pretty attractive. Can you please provide any more information to assist with making this decision.
Hi Jokhere, I have been taking Hizentra for almost 4 months now. I was also considering a port, and my infusion nurses were really encouraging me to go that route. However, my wife is an RN, and explained to me to constant risk of infection while using a port. My neurologist never even mentioned a port when dealing with the issue of vein scarring. Starting an IV was turning into a chore, with having to be stuck up to 4 times per visit to get one started. My Dr. asked if I was willing to try Hizentra, and I had already been doing my homework, so I said yes. I was not looking forward to sticking needles into my stomach, but was willing to give it a try. I take treatments 2 times weekly, and have to use 4 needles. I put numbing cream on with 3"x 4" bandages 1 hour before inserting the needles. While the cream is working I’m setting up the syringes and tubing. It is kind of a drag doing this twice a week, but I hands down would rather take IG this way than an IV. I can walk around, and even take my dog outside to play ball while taking treatments. No big IV set up to lug around. I don’t have any side effects other than muscle ache sometimes, but that beats the horrible headaches from IVIG. I’d be happy to answer any more questions if you have any. Hope this helps, and looking forwards to hearing about your progress! Jack
Buster, good to hear you are doing well. I have been taking Hizentra for over a year now and it works great. I could not take IVIG due to an allergic reaction I had to it after trying twice in the beginning (extreme meningitis type headaches). Then over the course of about 8yrs I was in the hospital for about 8 times getting plasma exchange. That is a 10 day stint in hospital each time. Not for working people!! So just to let you know, Hizentra works for me and I hope it will work for everyone. Ain’t nobody got time for hospitals!!