Living With MS

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

Thursday, October 29, 2009




My Tysabri Diary..... - I received my 40th Tysabri dose yesterday...,,

Barely, it's as if Biogen is doing everything in its power to try and defeat the Touch program and make it almost impossible for the patient to receive the medication , grrrrrr! What a total fiasco I went through yesterday just to receive my much needed medication, Tysabri!

I'm sure that part of this problem I'm experiencing is due to Kaiser Permanente's policies, but I learned yesterday that the doctors prescription for Tysabri is totally separate from Biogen's Authorization..., in other words the doctors' orders/prescription for the medication is not good enough for the pharmacy to release the medication (even if they have it, which they did) until the pharmacy had a "Written Authorization" from Biogen to release the medication to the patient, say what?!?!? Two separate forms?!?!?

My regular infusion nurse had a line already in me, and faxed my doctor's orders to the pharmacy for them to start mixing my Tysabri, and while I was waiting, I was receiving saline (which should have been for only 20 minutes max), so my infusion nurse went into a meeting. During that time, apparently the infusion center (which has computers, and the notation was made there that the doctor's orders were good for six more months, with Authorization having been given by the manufacturer/Biogen). Well, after 45 friggen minutes, and still no medication having arrived at the infusion center yet, and my regular nurse still in a meeting, I started "raising Cain" so to speak, I mean after all, come on now - the infusion itself takes an hour, and my medication isn't even there yet???


There were two other "Touch certified" nurses at the infusion center, and they are telling me that this is a "research medication" and Biogen has to separately Authorized it??? Oooooh no, did I just hear them right??? I screamed out in frustration, "Tysabri is not a research medication, Tysabri is FDA approved, and your Touch Certified?!?? And furthermore, I saw the Authorization in my chart, and I was informed that the pharmacy has everything they need, and now you're telling me they don't??? Please go get my regular infusion nurse, now, as I'm not waiting five more minutes for a "professional" to try and explain something to me that knows absolutely nothing about Tysabri nor its protocol for heaven's sake!". ARRRRGHHHH!

My regular infusion nurse shows up, calls the pharmacy, and tells them that Biogen's "Authorization" is noted in their computer and to send up the medication ASAP, has a discussion with the two nurses there and shows them on the computer where the Authorization is duly noted, and that the patient (me) should not have to wait for her medication at all, that they need to read, not make up some BS explanation..., adding to this problem is the fact that the pharmacy (Kaiser Permanente's pharmacy) does not have computers linked to the infusion center's computers, and I was assured that this will never happen again..., Good Grief!


I'm still trying to figure out why Biogen has to authorize anything, I mean the doctor's order is in my chart, my neurologist is "Touch Certified, and the pharmacy is within the "specialty pharmacies" that are authorized to dispense Tysabri..., so why the "separate Authorization form"??? Don't they trust all of the rules and regulations they have already burdened patient with, and now just another rule and regulation???

So after all this hassle, I finally received my 40th dose of Tysabri, hallelujah!

Okay, I'm exhausted now and I need to go do my physical therapy, so take care everyone and enjoy your weekend...., Lauren

7 Comments:

  • At 6:56 PM, Blogger Diane J Standiford said…

    Sorry you had to go through all that. I DO wonder what gives...? Extra protection for the drug maker I suppose.

     
  • At 4:11 PM, Blogger Lauren said…

    Thank you Diane, but I think it's more than just extra protection for the drugmaker, I think it has more to do with Kaiser Permanente's policies and how the right hand doesn't know what the left hand is doing (shrug), oh well..., let's just hope that never happens again, not to me or any other patient currently on Tysabri therapy.

    Thanks again for your comment...,

    Lauren :)

     
  • At 9:32 AM, Blogger Herrad said…

    Hi,
    Came by to say hello and wish you a good Halloween weekend.
    Love,
    Herrad

     
  • At 9:40 AM, Anonymous Anonymous said…

    This comment has been removed by a blog administrator.

     
  • At 4:27 AM, Blogger Brandon_lipz said…

    dude my best time when i get is 4 hours of waiting then i get the infusion then i have to wait an hour after my doctor says becasue im so young (16yrs) she said i have to take bloods and get examined beforei take it and seriously atleast your getting the drug be happy that you are

     
  • At 2:58 PM, Blogger Lauren said…

    Well Brandon, I have a few issues with your post..., you said "dude my best time when i get is 4 hours of waiting then i get the infusion then i have to wait an hour after my doctor says becasue im so young (16yrs) she said i have to take bloods and get examined beforei take it and seriously atleast your getting the drug be happy that you are"

    1. First of all I am a "dudetteā€, not a dude;

    2. You have to be 18 years of age to receive Tysabri.

    3. If you have to wait four hours prior to receiving your Tysabri infusion, sounds to me like your infusion center doesn't know what they're doing.

    4.Having to have blood work & be examined prior to receiving your infusions sounds to me as if your doctor doesn't know what she's doing either.

    I'm sorry to say I don't believe you have ever been on Tysabri therapy.

     
  • At 5:19 PM, Blogger Denver Refashionista said…

    What a fiasco...

     

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