Tysabri - I start today

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jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/6/2008 4:14 AM (GMT -7)   
I start Tysabri this morning. Insurance approved and my infusion center is 'trained'. It took over a month from the time I convinced my Dr that I should be on it until now (that's a whole different story). But today is my day.

I've been on soooo much Pred as of late that i'm puffed up like i can't believe. details to come shortly...

J

CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 3/6/2008 7:22 AM (GMT -7)   
What is Tysabri? Never heard of it before.
Current Medications:

Pentssa, 1000 mg qid
Vitamin B Complex
Trader Joe's Probiotic
Folic Acid
Remicade infusion; every 8 weeks
Klonopin
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/6/2008 7:36 AM (GMT -7)   
My thoughts are with you! I'm still working my doctor to get it. I handed in my enrollment papers, but he's not certified to infuse yet, just prescribe. He's thinking the local hospital might be soon. Otherwise, so it turns out, my old doctor's infusion lab is certified. I guess I could go there, but that would also feel weird. I just want the drug. Now that I've made the decision, I want it asap!

Is this your first ever experience? Or were you a trial person? I'll be wishing the best! I hope you feel better very soon!

(also sick of steroids!)

ps to CatMan -- Tysabri has been used as a MS treatment and was just approved for CD in Jan. It's got a lot of risk to it, so unless it's last chance, they won't prescribe it.

CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 3/6/2008 8:01 AM (GMT -7)   
Thanks s5599
Current Medications:

Pentssa, 1000 mg qid
Vitamin B Complex
Trader Joe's Probiotic
Folic Acid
Remicade infusion; every 8 weeks
Klonopin
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/6/2008 4:45 PM (GMT -7)   
what insurance company/hmo do you have?
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/6/2008 4:56 PM (GMT -7)   
Good luck, jid!
Co-Moderator Crohn's Forum.


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/6/2008 10:24 PM (GMT -7)   
Tysabri is taken! Compared to Humira (which I can't take anymore) the infusion time was shorter (1 hr), no reaction at all, no burning, no nuttin'. easy as pie. It is being touted as another miracle drug. So far (16 hrs later) I don't feel much different. my afternoon felt a touch better but i don't really expect anything until tomorrow at best. I'm optimistic even though i'm the one who usually does NOT respond well to treatments.

For Tysabri, it went like this:
- sign your life away form
- answer a couple of questions for the infusion nurse
- get on the IV for 60 min
- sit for observation for 60 min
- go to work

It was pretty easy.

I'll post more feedback/results as soon as I have something to report. All I have to report now is that I'm tired b/c I went to bed at 2a last night and got up at 6a this morning to go get the infusion done before work. phew!

for the person who's lab isn't certified yet: you can get the tysabri people to give you a list of all the labs that _are_ approved. my center wasn't approved at first but it took about 2 weeks (and some lost paperwork) to get them approved. there was another place about 30 min farther which i would have gone to...but i was able to get in relatively locally.

thanks for listening! I'll keep y'all posted!

J

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/6/2008 11:29 PM (GMT -7)   
Hi there jid,

I'm glad to hear that the infusion went so smoothly. No reaction, no nothin', is great news!

Please do keep us posted. I'm looking forward to hearing how much better you're feeling!!

Excited for you,

Ivy.

PS. I'm sure this was a brave and frightening thing to do - good for you.
Co-Moderator Crohn's Forum.


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/7/2008 6:55 AM (GMT -7)   
Brave and frightening is driving to work everyday. I know all the pit-stops but even then that 15 min drive sometimes requires multiple stops.

I'm optimistic about the new drug. For all of us!

Thanks for the support out here! Lord knows i need it.

J

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/7/2008 8:16 AM (GMT -7)   
Thanks so much, J, for theupdate! I was thinking about you yesterday hoping good things. I found out that the local hospital is certified and now all we are waiting on in prior-authorization. I have BlueCrossBlueShield, so I am hoping they are quick about it! Can't wait to hear how your week ahead goes.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 3/7/2008 8:48 AM (GMT -7)   
Jid,

Glad to hear that all went well. Hope you continue to feel well. How often do you have to have infusions?
Current Medications:

Pentssa, 1000 mg qid
Vitamin B Complex
Trader Joe's Probiotic
Folic Acid
Remicade infusion; every 8 weeks
Klonopin
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/7/2008 9:53 AM (GMT -7)   
The infusions are every 4 weeks...
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/8/2008 10:39 AM (GMT -7)   
Update - 2 days after the infusion, no difference. :( I still have hope but i don't feel any different.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/8/2008 11:38 AM (GMT -7)   
Here's to hoping that two days just isn't enough time to show the difference... Hang in there and try to stay positive. Even when I did the Prochymal trial (and healed 50-60% in 28 days) it took about 10 days to notice a difference. I'll be keeping good thoughts for you!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 3/8/2008 12:09 PM (GMT -7)   
Thanks! Remicade helped within 24 hrs. most of the other meds take 24-48 hrs with me. we shall see. i'm holding out!!! :)

J

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/8/2008 4:59 PM (GMT -7)   
If it's any help, it took about 17 days for the Rem to work for me. Keep on hoping.

I.
Co-Moderator Crohn's Forum.


Mark Mac
Regular Member


Date Joined Mar 2008
Total Posts : 41
   Posted 3/8/2008 6:08 PM (GMT -7)   
Hang in there J.

Mac
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