Yesterday I had my 5th Tysabri infusion. Before they hooked me up I saw my neurologist as always. Everything seemed fine with me so I asked him a question. I wanted to know if what everyone says about the rebound effect of Tysabri is true. For those of you who do not know, they say that if you stop Tysabri then in about 4 months you will undergo renewed disease activity, or in simpler terms, you will relapse hard! The disease seems to become about three times more active. “They” say the shorter the amount of time you have been on Tysabri, the worse your MS was before you started it, and the better Tysabri has helped you, the worse you will rebound after you stop Tysabri. So I asked him if this was true and he said definitely, every bit of it. I then asked if that meant I was stuck on Tysabri indefinitely since I was three for three on the above factors. He said “no, hell no“.
He mentioned switching to another therapy if that time came and I mentioned that I have read that it doesn’t seem that switching to any treatment after stopping Tysabri prevents the rebound. He then told me about a new MS treatment they are working on, I can not recall the name nor can I find it online, this treatment is also given via IV but not as “often” as Tysabri. I forge the name, I am so mad at myself, but it’s not FDA approved yet so it’s not Novantrone. I want to find out what this is because this could change the course of my life drastically so if you have heard of it please let me know below!
He also asked how the Acthar (ACTH) is working and I told him well and when he asked about the last round I did I told him that it did not seem to be working as well as usual but that is probably because it’s getting hot again. He brought up IVIG (Intravenous immunoglobulin) and how he thought it would be worth a try. I have not got familiar with IVIG yet because no one was ever willing to give me anything but steroids before so I can’t exactly say what it is yet. Nonetheless, I said “let’s do it” so he wrote the prescription and told me it’s a 5 hour IV but they would send someone to my house to set me up with an IV at home. 5 hours sucks but at least I get to do it at home and it will be worth it if it helps!
So I am going to try to find out more about this mystery IV drug and will post about it if and when I find out about it. I will also talk about IVIG when I know more!