Changing infusion sites---help??
 

I've been trying to get my infusion center switched to the Pittsburgh area since last Friday. I am getting the runaround from the case managers. They tell me they will call me back but of course they don't. So I call them every day:). I already have a site picked out and Biogen has the info that they need from me.

I've told them the situation with my Mom and that my next infusion in on April 9th.

How do I get them to stop dragging their feet? Any advice would be really appreciated.

Thanks in advance.:)

Oh Barb. I'm so sorry you're having a hard time. Don't give up yet! It could still work out:). :hug::hug:

JLL - Ref infusion centers in your area
 

JJ & LL,

I got it. I asked the same question about infusion centers in my area a while back.

Please ref reply to my post on TY (this) board on 3-6-08 by Riverwild. Per her, I did a google on MSActiveSource. I don't recall what number I called but it was not problem to find and they put me straight to a sup w/o my asking. They were great to me; I got all centers in every distance from here I asked for - ex 25 - 50 - then 75 miles. When you find it please post number. I should have. My bad. Good Luck Sheena:hug:

joellelee2000

Don't give up yet, hang on tight and try to calm down. I know easy said - hard to do! Below you will find a copy of a post from Lauren dated 3-2007.

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"...the Tysabri PI guide states on page 14: "If the presence of persistent antibodies is suspected, antibody testing should be performed. Antibodies may be detected and confirmed with sequential serum antibody tests.

Antibodies detected early in the treatment course (e.g., within the first 6 months) may be transient and disappear with continued dosing.

Repeat testing at 3 months after the initial positive result is recommended in patients in whom antibodies are detected to confirm that antibodies are persistent. Prescribers should consider the overall benefits and risks of TYSABRI® in a patient with persistent antibodies. "

laver: I have been advised that if you are pre-dosed with Benedryl or Claratin and given Tysabri at a slower drip rate, this greatly reduces any risk of an adverse reaction at the time of the infusion if the nabs are transient. Check with your dr. is my best advice and good luck!

(((((hugs)))))

Lauren"
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I hope this gives you a bit more info.

I'm so sorry - hang on - it may very well be temp.

Good Luck Sheena :hug:

I'm sorry Barb, but maybe it will pass? Cheryl is right, there are other options to consider. Maybe you could even get into a trial for an oral treatment if the Tysabri doesn't work out?

My plan is to go back to Copaxone if necessary. I hope it doesn't come to that, but I suppose I could develop antibodies eventually.

Thanks Sheena - I missed Riverwild's reply post.

From MSActiveSource website:

"MS Support Specialists

Our highly trained MS support specialists assist hundreds of callers each day. Our extended hours mean you can contact us from the privacy of your home and rest assured that the call and services are confidential and completely free. Our MS support specialists can be reached Monday-Friday, 8:30 a.m. – 8:00 p.m. (ET), by calling toll free 1-800-456-2255."

I just called them and they were very helpful in giving me information about every infusion center within 20 miles of home.

I posted (yesterday?) about the new information on the www.tysabri.com site.

Click this link, type in your state or zip and see what comes up. You can get results in mile increments. http://www.tysabri.com/tysbProject/t...ion-center.xml

While all infusion centers listed may NOT be TOUCH certified, they will be if there's patients looking for infusion. I was the first person in my county to be infused with Tysabri and my tiny hospital ( 25 beds) was certified within a week when Tysabri was prescribed for me.


Good Luck to you and LL and let us know how you make out!:)

You have a PM!:)

# 12!!!
 

Hi everyone!

I'm in a goood mood today!

I worked all night last night, slept for 4 hours, got my sorry side outta bed and went for my infusion today.

It was # 12. It might have been the easiest one yet! I was in and out in 2 1/2 hours. They even gave me lunch and coffee!

Once again, there were no problems, no concerns. Everything went smoothly.

The nurse showed me the new paperwork they have to fill out, with the Crohns patients having their own section now. I got the new booklet too, with information for Crohns patients included in it, first copy out of the box!

I'm building a wall here at my house, with all my vials and boxes! :p

:( Can't handle living in more limbo
 

Joelle - I hope you get it worked out soon. I don't have anything overly nice to say about the TOUCH case managers. Sorry.

Barb - I hope it passes - that it was transient antibodies (don't know the right language here)....but that it will work out well. I can imagine how you must be feeling right now.

Well, I wish I had good news to report - but I don't. Again i had another day of crying and just being so upset that I could barely function. Oh, and add an anxiety attack on top of that, too.

So, I called the infusion center to confirm my appt for Tuesday morning - to make sure they will have meds, have all my paperwork, etc. The receptionist tells me that I'm only scheduled for the consult - not the infusion. I was like oh no - no way - I was told the infusion would happen...I've rescheduled my entire week, etc. She told me it was "up to the doctor's discretion" - so when I asked her how often does it happen - she said she's never seen it happen (consult and infusion the same day). I about lost it.

This of course all happened on my way to my therapist's office. LOL. I cried - but mainly I was in a silent temper tantrum I guess. Just tears falling - she kept trying to get me to acknowledge that we don't know yet whether or not it is going to not happen on Tuesday, etc.

I didn't realize it until a little while ago - but that's the thing about this - there is SOOOOOOO much that we don't know - I don't know how the disease is going to progress, I don't even know in the morning if I'll be able to walk or remember my cat's name! So this - this is something we CAN know and SHOULD know - why is it so difficult? My anxiety has been out of control - I can't just "wait and find out" - though apparently I have no choice in the matter. I think it is VERY cruel to not just give me a definite. I even asked what if I don't do it that day - then when is next avail appt - and they couldn't tell me that either.

I contacted my case mgr at TOUCH. He called the infusion people - he knows them well there - and was told by the office mgr that there are chairs available for an infusion that day for me - and that that's the reason they have me an 8:30am consult - so that if the doctor okay it - I can have it that day. Supposedly I'm pencilled in for one of those chairs. Of course, I say supposedly b/c I don't trust a thing anymore.

I'm so wiped out. Been in this exacerbation for 3 months now...dx a little less than 3 months now. I have a lifetime of question marks and unknowns in front of me.... this stuff (scheduling, etc.) should not be one of them. I've jumped through every hoop - why can't I have the meds already?!

I asked what exactly would make the doc say I couldn't do it that day - and they couldnt tell me - just that it was his discretion.

I'm very angry, hurt, upset, sad, and frustrated right now. I'm actually also petrified to go on this medication - yet I've been begging for it - and I've been mentally preparing myself for it to happen on Tuesday. But now what?!

Sorry to rant. :( I'm besides myself...

~Keri