Tysabri question??

[SarahL2491]

Any of my fellow Tysabri users subjected to monthly blood draws?

This new site I am set up to go to states its their policy to draw blood monthly for in depth CBC and liver function.  Told them I just had that done in October at neuro and also didn't think Medicare would pay for it that often.
They replied that it was Biogen's recommendation.......ah yeah sure and the tooth fairy comes to all of us.....

Will thinking of talking to my caseworker, I just have never been asked to do this monthly.

Any thoughts gang?

[Antalya]

Hi Sarah -  I think more blood testing is better than less - as long as you get copies of everything and staying in the loop.  
I was complaining about extreme fatigue at my last Tysabri infustion.  They did a urinalysis and bloodwork.  My neuro-dept said to go ahead and do the infusion.  (My dr.was not on duty that day)  A MONTH later I had an appt w/ my Dr.  "You did know you had a urinary tract infection, didn't you?"  NNOOOO  I didn't!!!!!  So I had an infection DURING the infusion.  I was angry.  (Plus not feeling like I had an infection. Not good.)  
So be glad this is all resolved ahead of time for you!  Harumph.  That was at the beginning of Dec.
I'm not getting another infusion till I get my financial situation resolved w/ Tysabri.
Is your infusion center comfortable and convenient?  If so, I'd want to keep it.   But yes, take a break.  Do something nice for yourself - and since I'm from NJ I say "Fah geht tah bought et"  :  -))


I

[SarahL2491]

thank you all for your patience with my tantrum over this!  I'm a lot calmer now, doesn't take much stress it seems, at my age, to rattle me.  Am still waiting for answers from my trusted source and then will make a decision as to whether or not to change infusion centers.  I may give this site a one month trial or I may go back to my neuro.  

Am taking the week-end off from even thinking about it! You guys are the best

[rendean]

I am fortunate that my infusion center is at an MS Center. It has  neuros in house , although my main treating neuro is at another hospital. Their infusion center treats only MS patients and the nurses are well versed in the protocols and advers reactions,etc.

Ren

[kwarendorf]

Should it ever come to monthly testing for me, I'm lucky that my infusion center IS my neuro's office. At least the testing would be handled by qualified people.

Kyle

[SarahL2491]

Oh what the heck, think ill join the rebellion group against DMDs, too much turmoil for me

[SarahL2491]

Thanks Ren, I just don't feel comfortable with it, I feel it's too often

This will be a stumbling block for me, I'm just a stubborn old nurse who understands liver damage but would prefer to leave the testing up to my neuro not a "drop  in infusion center"

[rendean]

Hi all,

My TOUCH center DOES monthly CBC, CD4 counts and liver function tests as a routine part of the Tysabri infusion experience. We see mid level practioners (MS Nurse Practioners) or the MD on a rotating basis so every 3 months I see the MD.

Tysabri can cause liver dysfunction so they feel the testing is necessary to catch any developing trends. the CD4 counts and CBC they use to track treatment effectiveness.

My costs are covered, some by Biogen as part of after-marketing studies and/or my insurance.

I feel very comfortable with my set-up.  BTW, they test for the JC virus every 3 months in case of sero-conversion due to the Tysabri.

Ren

[SarahL2491]

Powers that be are checking on it but. If its just their policy, I'm not going to be going there, it makes the nurse in me uneasy.

[sllowe]

Just do what you are told, hahahah You know I'm only kidding!

I do not know the protocol, or new recommendations. But, I'm sure we have some that do.

I'll hit up a few of our Tysabri users for you incase they did not see your post!
-shell

[Doll555]

My neuro checks mine every few months and I provide a copy to the infusion center.

[kwarendorf]

I have never been asked to have monthly blood tests. I glanced through the Tysabri Prescibing and Patient info and saw no mention of this protocol.

Kyle

[SarahL2491]

Thanks kat
I can understand a couple times a year but not every month!

[torikat32]

Hey Sarah I just been told the same thing week before infusion blood draw then infused the following week. I didnt know why I needed it so thanks for the info

Kat