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Grand Magnate
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Join Date: Jan 2008
Location: Illinois
Posts: 3,836
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Grand Magnate
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
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I am sorry you are having such a tough time getting everything set up. I do think you need to take a deep breath. It sounds to me as if your neuro's office who first ordered the tysabri is really disorganized or in other words screwed up. They should have scheduled the first appointment for you at an infusion center and followed up on everything. It sounds to me as if they have not dealt with prescribing tysabri very much. I imagaine it probably does take 2 to 3 weeks after you are approved for the first infusion to be set up. I know I was approved very quickly, but there was a 4 week period between my last copaxone injection and the first infusion. During that time, the nurse had to contact the speciality drug company a few times, etc.
I know that my infusion nurse still has to call my speciality drug company every month to remind them to send the ty and she insists they deliver it on the Friday before my Wednesday infusion. I don't have a whole lot of choice on my infusion days or times. So far I have had an infusion every 28 days exactly. My neuro now says he must be in the office (due to my problems) when I have my infusions so I may be limited even more if he is on vacation. Plus he only seems to be in the office on Tuesdays and Wednesdays. I am a professor so I esentially miss my classes and meetings on the days of my infusions and take a sick day. I don't really have a problem with that but I understand others may not have the same benefits or flexibility in their schedules. But I do think you need to understand that they are going to have to schedule you around everyone else who is already receiving tysabri and that many centers may only offer tysabri on specific days.
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