Today is My First Tysabri Infusion Excited & Nervous

[Lisa_DeVore]

I have been on Rebif since 2005. Had to stop taking it because of site reactions after being it so long. I started with Tysabi infusions yesterday and it went wonderfully. I wish I had switch year ago.

Janet Becker

Your post made me feel so much better, as the same thing happened to me on Rebif. I wish I had stopped it sooner - but everything happens for a reason.
First infusion Thursday!

[Mynamegoeshere1]

Monday

Monday will be my 1st infusion. I am sure hoping it goes well. This will be my 3rd medicine since October of 2011. I was allergic to Copaxone and Betaseron made me progress worse so here I am with the Tysabri. I am now not sure if it was the Beta making me worse or just the MS. It has been 2 months with no medicine and my Dr. told me I am progressing still and now thinks I have lesions on my spinal cord as well as my brain. I get my new MRI's on Friday. We shall see. I just am very hopeful for Tysabri to help me as it seems to help all of you!

[lindaincolorado]

Amy, how are you doing ?

Your last post let us know you had #2 and needed Benadryl?
Have you had more infusions ? How are you ?
Hope you are well and doing well !!
Linda

[momof4boys]

Your last post let us know you had #2 and needed Benadryl?
Have you had more infusions ? How are you ?
Hope you are well and doing well !!
Linda

Linda~ Thank you so much for checking in! I have had 3 more infusions and with the premedications I'm tolerating the tysabri. I have to take oral steriods and benadryl daily for 4 days leading up to the infusion..a small price to pay for big rewards.
I feel like I almost don't have MS at all. I'm back playing competetive tennis and doing most evertything I was before I was diagnosed in January.To think back as to how sick I was in Jan, Feb & March it's unbelievable..the tysabri is really working THANK GOD!
I hope you are doing well and I hope my results on TY gives hope to those just starting or waiting for results.
Amy

[msmoonlite]

Your post made me feel so much better, as the same thing happened to me on Rebif. I wish I had stopped it sooner - but everything happens for a reason.
First infusion Thursday!

I was also on Rebif since 2005. I never stopped getting red spots at my injection sites. The past few months the other side effects (aches, flu like symptoms, depression) got so bad my neuro switched me to Ty. First infusion was last week. So far so good.

[jkuzara11]

Thank you for your updates everyone. I am going in for my first infusion this afternoon. I am a young(ish) mother of 3 and was diagnosed in 2008.

I have tried most DMDs with no success and awful side effects that never went away. It was with great hesitation that I came to TY. It was only after my last relapse (2 within a year), a drastically worsened MRI and much research that I decided to try. Being JC- was pretty much the deciding factor for me.

I am very nervous.

[Myoak]

JKuzara11,

Good luck on your new med! You mentioned that the deciding factor for you was being JCV-. I have to agree with anyone JCV- accepting a 1 in 11,000 chance of PML along with the 1 in 3 chance on Tysabri of being “free of disease activity” as reported by Havrdova E et al. Lancet Neurol 2009;8(3):254-60.

If you are interested in more information about Tysabri’s benefits/risk you may want to check out this link:

http://www.investorvillage.com/smbd....2048678&pt=msg

If it helps at all, I personally know patients who were in the Phase 3 trial of Tysabri back in 2002 who continue on it today and are doing very, very well having received approx. 115 doses if you include Phase 3 trial infusions. Best wishes

[LL60]

jkuzara11 -
How did your infusion go?
Hope all was well and you have long road with excellent results.

[jkuzara11]

Thank you Myoak for the link. Those graphs and charts are great!

Hi LL60! The infusion went well. My blood pressure was way up when I got there. I came straight from a busy day at work and was a bit nerved up from worry about the infusion.
I premedicated with 2 Aleve and a Claritin and drank nothing but water for 2 days prior.

My cath site did bruise up, but I think it was just because the nurse didn't apply much pressure on the area once it was pulled out.

That night I started to get a headache like I've never had before. A weird stuffy, achy, tight kind of headache. I took 2 more Aleve, which took the edge off.

I didn't experience tiredness like others have experienced. I tossed and turned most of the night. The same last night, although the headache was gone by yesterday morning.

I had a bit of 'soreness/tenderness' in my ankles last night. Almost like they would snap (I knew they wouldn't!) if I walked too much on them. So I just put my feet up and relaxed.

Today I feel good.

Love to all,
Jen

[LL60]

jkuzara11-
Yea. Sounds like it was a "normal" infusion. The first head ache sort of was a whopper for me too. Now I can go months without one at all.
Have a great long relaxing weekend.
To everyone too.

[lindaincolorado]

YAY Amy-wow playing tennis

Jen and moonlite, you newbies to Tysabri. Good luck and hope you do very well

[Mynamegoeshere1]

?

Quick question since I have finally been cleared after my breast cancer scare to start Tysabri. I've been without a DMD since June 4th

I already have bad insomnia and have to take ambien to sleep. Would I still be able to take this with the first few day insomnia associated with the Tysabri?

Another question, I also get migraines. I am afraid that the terrible headache that you all describe will be just the thing to start a migraine for me. I wonder if my migraine medicines are bad to take with Tysabri.

I know none of you guys can advise like my doctor can, but figure maybe someone may have gone through these questions already. I am supposed to get a call to start my infusions next week. Nervous.........but ready! Tired of progressing so rapidly!

[LL60]

Mynamegoeshere1

I take Ambien Sunday though Thursday nights so I can sleep for work. Otherwise I only sleep about 4 hours and have even gone all night without sleeping. I try not to take it on the weekends and over holidays and vacations. I find it works better if I take little breaks from it too.

I have been on Tysbari for over 3 years.

I would talk to your doctor about how to ward off a mirgraine starting with your infusion. A lot of us premedicate, so you may need to too and in just the right meds that you will need so you don't get a headache. And before hand, ask your neuro what you should do if you do get one.

But wishing you good thoughts and hope you don't get any headache at all - lots don't.

[Mynamegoeshere1]

Thank you

Thank you LL60. I was not having a good week when I saw him just a week and a half ago and meant to ask him, but totally forgot. My good days are few a far between. I will definitely remember to ask them when they call me to schedule my infusion.