Living With MS

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

Friday, January 19, 2007

My Tysabri Diary...
4th Tysabri infusion under my belt! Woohoo!

Valentine's Day is coming soon .. I completed my 4th infusion today after a 90 min. travel time one way for my caregiver, and a 2 hr. drive back (we hit traffic coming home). No problems, not pre-treated with Benadryl this time, just a 20 min. pre-Tysabri infusion drip of Saline while a different nurse at Kaiser's infusion center went over the standard pre-infusion check-list (this was the first time she ever infused Tysabri in a patient - so she read, re-read and re-read the orders 3 times).

When the 20 min. Saline drip turned into 35 mins...she started to re-read them again, I asked her, "
Please call the pharmacist to tell him the check-list is done, so he can mix my vial of Tysabri and we can get started, ... Then re-read the orders as many times as you like, okay?"

When she went to go get my Tysabri, I briefly spoke to the Infusion Administrator and asked her how many more patients are being infused there with Tysabri...she said none yet but she also said that [paraphrasing] they had received other TOUCH paperwork recently to process, but apparently 'there was a problem with Biogen/MSActiveSource's fax machine again (a multi-million dollar biotech's company still has a fax machine problem since October 2006??? Hmmmmm), and they 'finally' resolved that so other Kaiser patients are scheduled to be infused too...(she could not give me a number).

After a very long, long day, I am pretty tired so I'm turning in early tonight after a bite of dinner. #4 is now under my belt, and I usually feel an "overall feeling of strength with minor improvements here and there" within two days of my infusion....even though I'm beat right now, I am always excited to see what hope Tysabri delivers for me in the coming days (even if I only have the hope of no relapses or disease progression until my next infusion - I'll take it!), but I will always hope for more - heehee.

Goodnight all...,

(((hugs))) Love, Lauren :)
A very proud member of


  • At 11:36 AM, Blogger cindy said…

    Hi Lauren,

    ok, I had my first infusion the same day as your 4th, I have the head ache off and on and today it is a pajama day for mee . I feel tired and a little ackey. It was a long day for me to, 45min drive and 4 hours at the infusioin place, it wore me out I hope it will go faster next time.

    Hope your feeling better, I love how you keep up with your blog because it is helping me know what to expect or think


  • At 2:11 PM, Blogger Lauren said…

    Hi there Cindy...your headache, achy feeling and fatigue should wear off soon (those are minor side effects that have been reported)..nothing a couple of Tylenol or Ibuprofen and a power nap can't fix. (wink)

    Your next infusion should go a little faster (mine always did after the first one as you and the infusion nurses know what to expect).

    I can hardly wait for later tonight or tomorrow for any improvements...this morning I surprised Ray (my caregiver)again by being out of bed, in the bathroom and sipping a cup of coffee I made for myself (without spilling anything anywhere!)...I think I heard him growl under his breath this time - LOL.

    Hope you feel much, much, MUCH better Cindy - keep me posted, please?

    Take care now, Lauren :)

  • At 8:56 AM, Blogger mdmhvonpa said…

    You figure they could go electronic (read, image transfer vis-a-vis pc) instead of a cruddy old fax. Do they have a 2400bps modem for their mainframe!?

  • At 10:46 AM, Blogger Charles-A. Rovira said…

    I will always hope for more - heehee.

    And so you should. :-)

  • At 7:27 PM, Anonymous Anonymous said…

    not that i am allowed to be reading this due to company policy, but we had a meeting yesterday in which was mentioned the current plan to automate TOUCH and make it so infusion sites can log in and enter checklists online. we had to prove to the FDA we could do it on paper. and about the forms.. it's not the fax.... there's one person getting all the forms that come in. and 21 on the whole team. sorry. we keep hiring more. TOUCH is growing faster than we can train people to do it.

  • At 9:02 PM, Blogger Lauren said…

    "the current plan to automate TOUCH and make it so infusion sites can log in and enter checklists online...we keep hiring more. TOUCH is growing faster than we can train people to do it" ...

    That is good to know!

    When do you anticipate this happening (infusion checklists going online), may I ask?

    I was told twice it was a Biogen 'fax' problem (once in 10/06 and then in 01/07), but your explanation is more plausible...,

    And you have only 21 TOUCH Case Managers for the whole U.S.???

    And only one person processing/handling ALL the TOUCH forms???

    I look forward to your reply to my questions when and if you are able to reply here...thank you so much for your valuable insight and your valuable time!

    Lauren :)

  • At 10:31 PM, Anonymous Anonymous said…

    about that many ... it has changed a little. we are hiring continuously but the process is 6 weeks of training and then a few months handling basic phone calls before another couple of months training to be a case manager. you don't think we let just anyone handle such sensitive situations? for every 500-1000 or so resumes we get, we hire 8-10 people.

    we have no idea WHEN we can take it online, but it's being examined to make sure we can do it effectively and with the privacy of patients in mind

  • At 7:43 PM, Anonymous Anonymous said…

    I went rond and round with my doctors office and Touch. Took 2 months and multiple fax attempts but I now have my 1st infusion appointment in 2 days!


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