Tysabri update - actually seeing results!

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jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 4/20/2008 7:47 PM (GMT -7)   
Quick recap: Been on 40-60mg of Pred off-and-on for the past 8 years. Remicade worked until I built up antibodies. Humira was a bust. So I tries Tysabri as soon as I could get my hands on it.

So here's what has happened with the Tysabri:

Week 1 - Had a really bad headache ~24 hrs after the first infusion. Got sick as a dog (as in the kill-me-now type of sick) 4 days after my first infusion. My in-laws had been in town so it was a stressful time. It felt like the flu but I definitely had a fever. CD was no better.... in fact it had gotten worse.
Week 2 - Am I still alive? I'm wishing I wasn't. can't sleep. can't eat. CD is worse than it was the previous week. I think i'll starve myself and get off this Tysabri.
Week 3 - Feeling a little better. Dr says that it sometimes takes 2-3 infusions before a patient notices anything. I call BS on that since Remicade (when it worked) worked within 48 hrs. but I'm not a Dr. so i'll keep trying.
Week 4 - Something has changed. I'm not sure what. But I'm starting to feel like things might actually be getting better.
Week 5 - Infusion 2. Feeling not-that-bad. Got a massive headache 24 hours after the infusion. That headache knocked me out for an entire day. yuck. But the next day, I was feeling pretty good. And feeling brave enough to try to taper off of the pred.
Week 6 - I'm well into a pred taper. I tend to taper faster than most and in the past i'd hit 20mg and then get really sick if i went below. This time, not so much.
Week 7 - Ok, I tapered REALLY fast. But I'm off of the Pred. I'm tired a lot and I'm a little scared (to be off of the pred). But i'm managing.
Week 8 - Most days were good. had a bit of a flare (maybe related to what I'd eaten?) one day this week. But overall I'm liking the Tysabri.

I stay away from milk still (tried and failed that test) but I have eaten an apple every day for the past week. And w/o the Pred, I can actually taste it! I have more abdominal pain than I used to have, but other than one day in the past couple of weeks, it is mostly bearable.

So that's my update. I honestly don't know if i'll be able to stay off of the pred. it's been 4 days... maybe 5. and i tapered from 10 to 0. But so far so good.

If anyone has any Tysabri stories, please post them (good or bad).

More to come...

J

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/20/2008 8:09 PM (GMT -7)   
Hi, I hadn't heard of Tysabri stories till this one. Would love to hear of more. So do you think your geting better? Sounds tough though. Are you taking anything else with it? Is it infusion, pills??? Do share, always curious. Take care.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/21/2008 8:07 AM (GMT -7)   

Wow!  Jid!  I am so happy to hear that!  I am happy for you... I felt like I had a slight reponse but the 3 days before my last infusion on Friday (and the two days after) I slipped backwards a little again.  I was beginning to fear that Tysabri was not working after all and that I ought to think again about calling the surgeon.  I think today is a little better (3rd day post infusion #2) again, but then I hardly ate all weekend.  It took a week at least to see any potential benefit after the first infusion, so I suspect it would not help immediately.

Oh, I had that headache after the first infusion.  Killer.  This time I slept on and off all day yesterday.  I've never done that so I think it's the tired/weakness effect.

Anyway, it's a scary place to be because there is nowhere else to go.  I've wondered how you are doing.  I am thankful to read your post.  Someone else on here (Dave123) said it was after the second infusion that he really noticed the difference with Tysabri.

Now it's my turn to start to taper again.  I could be off steroids in 2 weeks, but waiting to taper again.  I tapered from 16mg methylpred to 8mg after the first infusion but it was too soon to come off all the way.  I figure another week and I will drop to 4mg then alternate days until my body adjusts.

Thank you for sharing your story.  It was great to hear you are feeling better and you also gave me a renewed hope and belief!


--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!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 4/21/2008 3:36 PM (GMT -7)   
Whatever the headache factor is, neither the nurse nor my doc knew about it. But I DEFINITELY had it both times. I walk out of the infusion feeling fine but it is that night or the next morning that the headache hits.

As for the slipping backwards, i've been told by people who were on the Tysabri study way-back-when that it is like remicade in that within a couple or few days of the 'next' infusion you can feel it running out a bit... almost like the well is dry and needs to be refilled. I haven't been on it long enough but that's what i've heard. i'll report back next month when i actually have a clue.

Anyone else have Tysabri stories (good or bad)?

J

jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 5/8/2008 9:19 AM (GMT -7)   
Week 12 update - Took the Tysabri yesterday at 7a. normally it is mixed with a 100ml bag of saline. The nurse accidentally used a 50ml bag and we noticed that when the infusion was done 30 min early. The Dr was consulted and this was deemed fine.

2 other patients were given Tysabri at the same time and they all got the 50ml bag. This was my 3rd infusion. It was infusion #2 for one person and #1 for the second. We all passed the 1 hr observation.

So tell your infusion nurses that 50ml is fine if you are pressed for time!

How am I doing? Last night the chest felt a little tight. This morning as well. It feels like I lifted weights. But the anticipated headache hasn't arrived yet. and it has been 24 hrs. So far so good. As for general health, i'm still off of the steroids. This may be the drug for me after all!

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/8/2008 10:01 AM (GMT -7)   
I am so happy to read this jid! Congrats! You had a rocky start, I remember. I'm glad it's turned for the better.

I am at 7 weeks tomorrow, #1 infusion being day 0. So I've had two infusions and am due for #3 next Friday. I've been up and down still not sure that I am responding significantly enough to warrant the risk, but I will finish off my next 5 weeks and make a decision at that point. I was so sick on Monday that I thought for sure I was headed straight down a big old Crohn's tunnel of no return. But, Tues, Wed and so far today have been better again. Maybe I ate something? Who knows. Anyway, happy for you and still keeping my fingers crossed for me!

Thanks for the update and the info on the smaller saline bag!
--40 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!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/8/2008 4:24 PM (GMT -7)   
That's so exciting, jid! Congratulations!
Co-Moderator Crohn's Forum.


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 8:18 PM (GMT -7)   
Wow, interesting since I know so little about this drug. Please keep us posted on your progress, very interested on what is going on with you.

jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 5/27/2008 6:23 PM (GMT -7)   
Week 15 or so I (i've lost track)... i take probiotics and calcium but other than that i'm pretty much pill free. I still get headaches once in a while, but i'd say that i'm 90% improved. I still have the occasional flare, but it lasts the evening rather than the month.

Color me a winner w/ Tysabri.

Feel free to PM or email me if you have questions about my experiences. I'm just thrilled to death that something _finally_ is working!

i'm still tired all the time, but at least i'm not tired AND having 20 stools / day!
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