Quote:
Originally Posted by Natalie8
I had #13 yesterday. It got delayed a couple of days because I had the chance to be interviewed on the radio for my profession at the last minute and the only time they could do it was during the Tysabri appointment on Monday. So I thought it was worth it to delay!! I will go back to the regular schedule next time (25 days from now).
This was my second time at the new facility and it is a dream to be here.  Once again they ordered lunch for me at Subway and delivered it right to the chair. The infusion was slowed down even more -- to 2 hours. Whoohoo! I feel even more able to recover afterward (just fewer side effects). Everyone is so friendly and caring at this place -- I guess I'm just not used to that given the horrible experience I had at my MS clinic's infusion room.
I did learn that all new people going on Tysabri in my MS clinic are having their blood sent to a doctor at the NIH who is working on a vaccine for JC virus. I guess the director of my clinic is helping out this researcher. I wish I could remember the name of the doctor/researcher but next time I will find out. I thought this was quite interesting. I guess it behooves Biogen/Elan,to do everything in their power to figure out how to eliminate the PML risk from their "blockbuster" drug Tysabri so they can keep the income flowing in. As it stands now they are way under the numbers of people they predicted would go on this drug by 2010.
Just to add in response to the conversation generated by MdotDdot: There are people who will choose Tysabri as a first line option. And there is nothing wrong with that. I was mostly treatment naive before I went on Tysabri. I tried Rebif for only 2 weeks. The depression was so severe in that short time I had to stop the drug given my long history of depression. I tried copaxone for 6 1/2 weeks and the anxiety, insomnia, fatigue, and general malaise I experienced was intolerable and I couldn't do my job. I suppose I could have stuck it out even longer on the copaxone to see if the side effects went away but I decided that my quality of life was important to me. The side effects of those CRABs really do suck!! I came to realize that I also wanted to be as aggressive as I could in the earliest stage possible so I chose Tysabri instead of toughing out the Copaxone. For me the benefit outweighs the risk. I can forget that I have MS. I do not have any MS symptoms nor have I had a relapse. |
Hiya Natalie,
Glad to hear that things are going well with the new infusion center. It sounds much better than what you posted about your previous place!
I'm happy to hear that slowing the infusion is working for you too! Sometimes they overlook the simplest things, and make everything more complicated than it is. I found that out when I had the pinpoint itches and we re-mixed the bag and voila!
Good to hear that there's some investigation going on to prevent PML. I've been watching for something like that to start being news'd around. I'd love to hear more when you get more information.
I'm no scientist but I still believe that it's not the Tysabri, per se, but the immune system and what the patient was exposed to before Tysabri, or the dose of Tysabri relative to size of patient. I still can't believe that the dose works the same for someone who is 5 feet tall and 90 lbs. and someone who is 6'2" and 220 lbs. and I haven't seen any stats on that yet. It could turn out to be something entirely different but like slowing the infusion or re-mixing the bag, everything should be investigated.
Biogen reported no newly diagnosed PML patients today on their minimal information release page.