Quick update on Tysabri - 1st TX

Several of you have asked how it went and I am happy to report that there was no problem with any sort of allergic reaction.  I was absolutely wiped out by the time I got home - it is a 90 minute drive to get to the clinic, 30 mins to do the IVSM in advance, 60 mins for the Tysabri, 60 mins to wait for observation period and then the 90 minute drive home.  It was a bit of a long day.  DH thought I was pale and looked horrible when he got in later, and I thought I would fall asleep, but was awake until midnight.  Then I was WIDE awake at 3 am and didn't return to sleep.  Must have been the IVSM.    

Last night I had no problem falling asleep and staying that way until 6:30 am, so hopefully the insomnia was a one-night deal.

I'll go for the second one the second week of March. From what I know I might feel a change in about 3 months, but then again I might feel nothing dramatically different.    This continues to be part of this grand experiment known as MS - what works for one of us doesn't necessarily work for the next.

Enjoy your weekend and thanks to everyone for following my progress.

Lulu

[johnniebear]

thank  you so much for  the update..



thx
J.B.

[SarahL2491]

thanks Lulu, keep us posted!

[Sidesteps]

Yay! Lulu, I am glad to hear it went well.  My friend really likes Tysabri. I will continue to hope for positive improvement for you too!

[LisaJF]

Glad your Tysabri went well.  

Not so glad on no sleep!  Let's hope that is a one night stand!

Good for you!

Lisa

[Lulu54]

Lisa, I'm all in favor of one night stands!!!  LOL

Thanks,everyone.  It really is nice to know that you are following this saga and care how it goes.  It is reassuring to know we are not in this alone, although I would not wish this on anyone.

You're the best!
L

[Ufrustrated2]

appreciate the update. i didn't know you went on Tysarbi. last time i was visting the forum i think you were on copaxone? i think

anyhoo, a buddy of mine in our ms group here does the trsarbi thing. he praises it.

really calms his ticks & spasms down and helps him walk a bit better and we all notice his improvements. so i hope you get the same or better results!!

[SarahL2491]

calms down spasms?  yeehaa......
I start my Tysabri on Thursday, following in Lulu's footsteps......

[jujuminx]

Thanks for the update!  Good to know the only side effect was a one nighter.  Looking forward to hearing more as your journey continues.

Julie

[ku111]

So glad everything went well for you!  Thinking of you often and wishing you the best!  Have a great weekend.

[jenphilly]

I checked in early yesterday to see if you posted an update, was so happy to see this posted when I checked this morning!!!

Sorry it was a long day, but so glad it went well and no reaction!   I'm guessing the wired night was exactly what you thought, just the body's response to the IVSM.  

I know its too early to say hope you're feeling better, but we're hoping anyway!   And if nothing else, hope you're feeling better then being on copaxone with the reactions.

Keep posting and thrilled for you that it went well!

Sarah - keep us posted about how things go for you next week!   We're thinking of you and hoping it goes as well for you too!!!

Hugs to both of you!

Jen

[Sarahsmom46]

I have been wondering how you did on your first infusion this week. Thanks for posting and sharing the experience. I am thrilled you are trying something new and hope it will have a good experience with it. I hear very good things from others on it.  

Do they always do IVSM with tysabri?  I haven't heard anyone mention that before.  Good luck and keep us updated on how you are doing with it.  

Hugs,

Julie

[Guitar_grrrl]

I'm so glad you had a good experience!  Good luck to you.

I LOVE my Ty...

[SarahL2491]

I don't think IVSM is standard with Tysabri, it just happens that Lulu does.  I know I don't have it scheduled with my infusion coming up on Thursday.
Will let you guys know how it goes......I'm getting a bit twitchy now!

[sllowe]

Hoping it's all up from here! So glad it all went well :)
(((hugs)))

[Lulu54]

The IVSM is NOT standard.  It is something my Neuro does for the first three rounds of tysabri.. Something about making the immune system more receptive to the tysabri.. I will get a better explanation the next time I am there.  Sorry my brain did not grab the details.  

[Khiba]

This might be off topic, Lulu, but did you have the JC Virus test before starting? And if I might ask, were you having relapses or was your MS progressing on your prior DMD indicating a change?

I have heard how much better people feel on Tysabri and am considering it as my MonSter is progressing although I haven't had any major relapses on IVIG.

[Lulu54]

you know me, there is no topic off limits here and especially when it comes to my tx.  I did have the JC virus test and I was negative.

For anyone not understanding this question - JC are the initials of the first person known to have this particular virus.  Only people who have been exposed to the JC virus and developed antibodies (about 65% of the population) have contracted PML from taking Tysabri.  PML is a disease of the brain, which is usually fatal or at least debilitating.

There has not been a single case of PML in people who are JC negative.  Being JC negative for me was great news.

I had been on Copaxone for over three years and did well until late summer.  The injections began to hurt again and I was developing egg sized welts at every injection site.  The welts were usually still there a week later when it was time to do another injection in that area.

Mentally I was fatigued with the shots - the pain and discomfort had worn me down and I talked  to my neuro about taking a drug holiday.  He didn't like that idea and suggested I consider tysabri.  A mon th later I gave him my decision.  And the rest is now history.  

I have felt off since my infusion last Wednesday and am hopeful this is just  a temporary state.  I understand it takes 2-3 infusions to notice a difference.  

good luck with making this decision.

[Khiba]

Thanks Lulu, for your story. :)

I sure hope it starts working for you. Hopefully this off feeling is due to something else. I do hear most people feel great on Tysabri. A lady to takes her treatment at my infusion center is totally thrilled with it.

My Neurologist is not a big fan however. She will suggest almost anything before discussing Tysabri, but now with the JC virus test, she seems to be warming up to the drug.

I am going to put it off for a while and think about it. Luckily I haven't had any immuno-suppressant treatments so getting a negative JC test would certainly make me a good candidate for Tysabri. I just want to give IVIG a bit more time.

And, I am afraid that after a while on Tysabri and having to go off it for any reason, that I would not have any more choices.

[lovemy6monkeys]

Thank you for sharing your experience with us! I really appreciate it :-)

I hope the treatment begins to help quickly and that you start to feel better soon! ((hugs))
~Jess

[SarahL2491]

Hi everyone!

Sorry I have not posted my Tysabri experience sooner, I could read your posts on my phone while I was gone but could not write back until I got home to the computer!

Other than the tiring 465 mile drive (I stayed over before coming back), it went great.  My BP went up because I was so stressed out, but that's normal for me.  I would not even have known I was getting anything if I had not been totally bored and watching the IV bag!  I also met a guy who has been on Tysabri since 2006.  

So far I have no side effects at all from it.  I was surprised as they were going down the list and hang a vial of Benadryl with your bag just in case.

I am fighting a bout of bronchitis that I need to attend to today as soon as I have my dose of caffeine.  

Its fantastic to know its all I have to do for another 28 days!  I can see where this could be a good thing, hope it works!  MRI next Friday to see how many more "christmas tree lights" there are in my brain!

Sarah