Today, the nurse who comes to my house to flush my port (which I had put in so I could get the Tysabri) said that she heard from another patient that Tysabri is coming back soon. Is this true? She said that they found it only caused the deaths of those two people because it was being used in conjunction with interferon, and the interaction between the two drugs caused the problem. Has anybody heard anything about it coming back anytime soon?
I just talked to the Tysabri people yesterday and they said that the investigation should be completed by "the end of the summer". They are very hopefull that they can bring it back after that. It really made a difference for me. I felt like my old self again and NO aches and pains. My walking (which is my main problem) didn't seem to be a whole lot better, but I actually felt like excercising a bit---which could get me stronger. I only had the drug for 3 months when they pulled it from the market. Have you had the port in long? Have a great day! Barb
I'm not very familer with Tysabri ... what is a port and what is it for? If they do bring Tysabri back on the market is it any problem changing from Rebif to it? Do you know if there is any kind of transition period? I have heard several people on the boards speak very highly of it.
My neurologist had said that there isn't a problem transitioning from Interferons like Rebif to Tysabri. They would just have to give it enough time to make sure that the Interferon is out of your system before giving you the Tysabri.
I have the port because I have terrible veins. It is almost impossible to start an IV on me. It is a small catheter that is in my chest, below my clavicle. It is totally under the skin, and not visible but for a small bump. (and a huge scar where my surgeon cut me!) I have had it in since February. I was supposed to start the Tysabri in January. I was going to be one of the first patients in my doctor's office to get it. What a blessing that I didn't get it, because he was going to allow me to continue using my Avonex (I have since switched to Rebif) along with the Tysabri. Nobody knew any better. I went to the doctor's office in January to get my first Tysabri infusion and they could NOT get an IV started on me. Three different nurses tried. I have very very very deep, thin, squiggly veins. They ALWAYS have major problems starting IVs on me. In fact, when I was in the hospital last year for my first ever round of steroid treatment, they had to start a central line in my neck. So, the nure in the doctor's office said that the only way I could get the Tysabri was to have a port put in. So I decided that I really wanted the Tysabri, and I had the surgeon who took out my gallbladder insert a port-a-cath, as they are sometimes called, in my chest. I was all excited that in a few weeks, after I healed, I would be able to start Tysabri. Then, exactly two days after my surgery they pulled Tysabri from the market. I cried hysterically. I thought I had gone through this surgery for nothing. My surgeon said he absolutely would not even consider removing it, because it was too much of a problem to put in, and what if I ever needed some other kind of IV medication? Well, he was right. It came in VERY handy when I needed IV solu-medrol treatment in May.
So basically, Wobbley, a port is just a way to get instant access to my veins without having to stick me a billion times. It is a small catheter that is basically creating a pathyway to my jugular vein. They use a special needle and the medicine goes into me through the port in my chest rather than an IV in my arm.
P.S. If it is really coming back at the end of the summer, I will definitely find out. I have an appointment with my Neurologist on August 22nd. He is the chief Neurologist at NYU Medical Center, and is a world renowned MS specialist. He also participated in the trial studies for Tysabri. When it comes back, he will be among the first to know, and the first to get it in his office.
Hi Purple - i hope things work out for you. Given that you have access to that kind of expertise up in New York - please keep us posted! My wife is going through the DX process now and our hopes were really hosed earlier this year when Tysabri was pulled.