Living With MS

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

Friday, October 13, 2006

My Tysabri Diary...

Monday, 10/9--You guys will NOT believe the NIGHTMARE MSactivesource put me through today........ :(

How about I start at the beginning: at 10:00 am, my time...I receive a phone call from Kaiser's infusion center that my neuro won't be available on Friday 10/13, and that either the "TOUCH" program (although I couldn't find any language as such on the enrollment form that she be "available" during my infusion), or that Kaiser Corporate "requires" it (I can't remember what the lady said, all I heard were the words "I need to reschedule your appt", and I started crying).

I then reset it for the next available time (10/16) and called MSActivesource, who told me they still did not have my enrollment form and I asked the girl there to put me on hold and physically walk across the hall to double check with their Data Entry Dept...after a 5-10 min. wait, she came back on the line and told me it was still not received, but once received-it should only take approx. 24 hrs to get all the data in their computer. Okay, now I'm even more upset.

Then I call my neuro again and left her a message that I wanted my enrollment faxed over to MSactivesouce STAT (good thing she was busy making rounds at the hospital, as I was in no mood to be messed with).

THEN, I get another call from the infusion clinic, advising me that the Kaiser pharmacist called MSActivesouce to find out when he could expect receipt of the vial of Tysabri once they had me in their system because the patient (me) had an appt. on Monday. He was told that my infusion appt. set for Monday should be pushed back a few days just to make sure I was in their system, insurance coverage was confirmed, and the med was received. SAY WHAT??? HELL NO!!!! NOW I'm LIVID! I tell the infusion center emphatically KEEP THAT APPT! I DO NOT CARE WHAT THE PHARMACIST TOLD YOU, KEEP IT AND I'LL CALL YOU BACK THIS AFTERNOON TO CONFIRM, BUT DON'T YOU DARE RESCHEDULE ME!

THEN I get a call from my neuro's nurse/sec. that the enrollment form was faxed to MSactivesource LAST FRIDAY, but she re-faxed it again after she rec'd my message this am, and she called them to confirm they received it (also advising me to call them and confirm it too-like I wasn't going to do that anyway?) ...soooooo, then I call MSActivesource AGAIN and was told my assigned case manager was unavailable but they had my paperwork (DUH) and asked me if another case worker could assist me...I said "FINE PUT THEM ON!!!" The lady identified herself as another case manager that wanted to tell me about the TOUCH program. I stopped her mid sentence and said, "LOOK, I KNOW ALL ABOUT THE TOUCH PROGRAM, TYSABRI, THE INFUSION PROCESS..", she then interrupts me and asks, "Do you know about PML?" BIIIIGGGG MISTAKE!!!!!!!! As my friend GTRT says, I gave her the FULL LAUREN.

I said, "Oh, you mean Progressive Multifocal Leukoencephalopathy, which 2 "MS" patients acquired in the trials when combined with AVONEX and 1 Crohn's patient with a severely compromised immune system? The same 6:59 PML patients associated with Biogen's other drug Rituxan? The same PML that never showed up in any of the MS monotherapy trial patients and the 5,000 general pop. patients receiving Ty as a monotherapy from 11/04 - 2/28/05 for a grand total of 0:8000? That PML?" I then said, "PUT A TEAM LEADER (SUPERVISOR) ON THE PHONE, NOW!"

Ok, THEN a team leader gets on the phone and says (paraphrasing), "Well, Ms. Roberts, I understand you know quite a bit about Tysabri (DUH again), but did you know that medication Tysabri has been changed since it was originally released?" (I'm thinking WTF? DO THE EMPLOYEES THERE THINK THAT ALL MS PATIENTS ARE IN THE DARK???) I said (bluntly), "My dear, you are an idiot, the medication has not changed ONE IOTA. You might think that you are speaking to a fool, but I assure you, I probably know more about Tysabri, the risk of PML, the TOUCH program, the Tysabri label indications, AND it's benefits than your entire staff combined! Now explain MSactivesource's conversation (as indicated above) re: the pharmacist and moving my inf. date back a few more days from 10/16!"

Silence....she then wanted to talk about my being on Avonex previously and my relapses since 6/5/05, and wanted permission to contact my neuro as this need to be reported to the FDA. I said, "you guys don't get it, been there done that, and NO-YOU DON'T have permission to contact my neuro about that again, NOW ANSWER MY QUESTIONS BECAUSE I AM NOT RESCHEDULING MY 10/16 APPT!"

She said "I'll try to get ahold of your case manager and have her call you." I said, "NO, you WILL get ahold of her and have her return my call in the next 30 mins, with answers!' 10 mins. later, I get a call from my case manager, who tells me I'm in the system, she just needs to call and confirm that the inf. center and the pharmacist are TOUCH certified (as she did not have their required paperwork), and obtain Kaiser payment approval...not 15 mins. later, she calls me back (after speaking with my neuro) and advises me I'm good to go for my infusion on Monday, 10/16 (but the drug distribution to the pharmacist is not their responsibility, it's Elan's. FINALLY!

Of note: She also told me that Kaiser is only approving Tysabri on a case by case basis (I guess my neuro made sure I was approved for it. I hope that other MS in the Kaiser system, or elsewhere, don't have to experience the nightmare I went through today, but unfortunately, I fear they will.

Love, Lauren
A very proud member of


  • At 2:16 PM, Blogger Karyl said…

    What you write about are some of the fears I have with Kaiser and exactly the reason I am going with Blue Cross Blue Shield. I am happy you got it all straightened out and will wait for Monday's report.

  • At 8:44 AM, Anonymous Anonymous said…

    as someone who will be working for MSActiveSource as soon as i finish training, i read your entry with great interest. I won't be on the Tysabri team [at least not yet or in the near future] but i will certainly be asking those team members how something could happen like that and what can be done to avoid doing that to anyone else.

  • At 8:32 AM, Anonymous Anonymous said…

    You go girl! Always talk to higher ups when you feel you are getting jobbed.

  • At 12:28 AM, Anonymous Anonymous said…

    how has treatment been going?is it working?do u recomend taking it? sincerely
    concerned husband 12/09

  • At 11:36 AM, Blogger Lauren said…

    Hi Anonymous (a.k.a. "concerned husband"),

    You are such a dear for trying to obtain more information regarding Tysabri for you wife. :)

    You ask: "how has treatment been going?is it working?do u recomend taking it?"

    Treatment has been going well for me, thank you for asking. My MS is now stable and I have not had a relapse since restarting the medication in 10/06, and my recent MRIs showed no new lesions, woo hoo!

    I really cannot answer your last question adequately because I don't know your wife's past medical history: nor am I a doctor.

    However, assuming that your wife has a "relapsing form" of MS and her immune system is not compromised (a.k.a. very, very low), I would highly recommend Tysabri for her, as it is the most effective MS treatment available to us.

    I have a question for you though:
    Was she previously on medications/treatments that could leave her immune system compromised? (medications such as Azathioprine/Imuran, Methotrexate, CellCept, Raptiva, Remicade, Novantrone/Mito,IVIG treatments, regular monthly pulse steroid, etc.)

    If you want more detailed information for your wife, please feel free to contact me at: and please reference the word "Tysabri" in the subject line of your e-mail so that it does not go into my spam folder

    All my very best to you and your wife..., Lauren :)

  • At 4:43 PM, Anonymous Anonymous said…

    I learned a lot from your comments-thanks for sharing. I work at an infusion center and infuse both solumedrol and tysabri for MS. I recommend that nurses and physicians continue to note in their charting-the s/s or the patients exacerbations when they occur and the improvements following the meds. If in the future, medicare or private insurances question whether these meds help-there is past documentation in the charts.

  • At 12:32 PM, Blogger Lauren said…

    Thank you so much anonymous for your comment. It is always good that doctors and nurses make notes in a patient's chart as to whether or not they are having symptoms and/or improvements in their symptoms.

    You also state "If in the future, medicare or private insurances question whether these meds help-there is past documentation in the charts."..., there is already peer-reviewed published documentation and data which support Tysabri's efficacy, improvements in patient symptoms, and improvements in a patient's Quality of Life...., Medicare or private insurance companies need only review said current published data to see that Tysabri helps patients.

    But again, thank you so much for your comments.

    Sincerely, Lauren :)

  • At 5:44 AM, Anonymous Tony said…

    Lauren after some years have past since you went on Trysbi how is your MS doing?

    Thinking of going on the it soon.


  • At 1:12 PM, Blogger Lauren said…

    Thank you so much Tony for your comments..., my MS has remained stable for more than three years. I am having my 50th Tysabri infusion next week.

    If you are seriously considering Tysabri therapy Tony, I would suggest that you discuss Tysabri with your doctor, and I hope and pray that your MS will both become stable and that you see improvements in your symptoms (providing that the damage done from prior relapses has not become permanent).

    All my best to you, Lauren :)

  • At 8:39 PM, Anonymous generic cialis 20mg said…

    I, of course, a newcomer to this blog, but the author does not agree

  • At 11:05 AM, Blogger Lauren said…

    Anonymous, do not state what you disagree with, so I cannot comment on same..., but nevertheless, this/my post was dated in 2006, more than four years ago.



Post a Comment

Links to this post:

Create a Link

<< Home