Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Wednesday, May 14, 2008

My Tysabri Diary...
Hi everyone,

I just returned home a little while ago from my 21st Tysabri infusion... everything went well, no problems at all.

My infusion nurse told me that she went to a four-day seminar that was held by The Infusion Nurses Society, where Biogen presented more information to them about Tysabri, and the Biogen representatives spoke highly of Tysabri's efficacy and the great results that many MS patients are experiencing, etc....the only thing that bothered me was that she said the Biogen representatives presented Tysabri as a "second line therapy" and that it works great when other treatments have failed... grrrrrr. She also mentioned that they were going online with part of the Touch procedures, but she could not remember everything that the representatives presented regarding this aspect presented.

When I got home, I called MSActiveSource (1-800-456-2255) and spoke to a Touch Case Manager and he told me the following:

The aspects of going online for part of the Touch program were mainly to cut down on the paperwork required regarding the infusion center nurses' checklist (they used to have to fax the checklist over to Biogen) , for better communications between the infusion center and Biogen, to go over any PML questions/concerns (i.e. keep an open line of communication with the infusion center), to track the Lot Numbers of the vials (which will help Biogen/Élan better calculate how many patients are currently on Tysabri therapy), check the authorization dates for infusing Tysabri, etc. He further told me that there were not many infusion centers currently involved in going online, as they [the infusion centers] have been unaware of same until recently (that seemed rather odd to me, and I questioned him about that, but he told me that he didn't have any further information on the subject).

My infusion nurse did mention to me that a special code will be given to the infusion centers, the prescribing neurologists, and the patient so that they could access said information (which I think she said will be the date patient was last infused, their infusion schedule, etc.).

Sorry that I don't have any more specific information, but my infusion nurse couldn't remember everything from the four-day seminar, and the Tysabri Case Manager only gave me the generalizations above. So all in all, it was a good day.

Ray (my caregiver) and just arrived with pizza and mudslides, so I'm off for a quick dinner, my PT exercises, and hitting the hay early because I am a little fatigued (which is normal right after my infusions)...., my friend Chuck (who surprised me with Noël last December) is coming by tomorrow for a visit, and it will be wonderful to see him again.

Have a great evening everyone, all my best to you...,


Love, Lauren :)