Today is My First Tysabri Infusion Excited & Nervous

[momof4boys]

Well~ today is finally here. I will leave the hospital,which I've been in since Thursday, walk across the street to the MS clinic and start Tysabri.
I'm putting so much hope into the Tysabri ...I hope I'm not disappointed. It has to work ! I have to get better!

Thanks for all the great advise and encouragement.
Amy

[Sara Angela]

Best wishes!

Sara

[LL60]

mom0f4boys

By now you are finished with #1. Hope you get some energy and have a good experience with it. Some side effects some get don't last - like for me a bad headache I'd get that night. Rarely get them now.

It took about 6 months to really have concrete proof that Tysabri was working. I had a relaspe at 3 months. But by 6 months all my doctors were amazed. It now has been over 2 1/2 years. I don't get the splurge of energy like I used to - or maybe I just expect more. One thing I tend to do is if I get some energy I really take advantage of it and then I overdo and then I really pay for it. So pace yourself, especially with kids.

Are your boys in baseball? Take advantage and just sit back and enjoy the games - no being treat mom or offer to do the newsletter or anything like that. Learn to say no without the guilt. That has been a hard lesson for me to learn.

[Scooter24]

Just had #23 this am, I agree with what LL60 said, it took about 6 infusions before I felt a difference, put like all MS drugs it affects everybody differently. I used to get a slight headache for the first 3 or 4, but no more, also used to get run down about 4 or 5 days before my infusion, but that has stopped also.

[CougarMama]

Getting my first today too! Hope you feel good.

[REG53]

Hello Amy,

I hope your infusion went ok. I have taken 61 infusions and have remained stable. I always take 2 tylenol and 1 benedryl before infusion.

Hope all is well with your TY journey.

Cougarmom-- Hope all is well with you also.

[Janet Richardson-Becker]

Had First infusion Yesterday

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

[Sara Angela]

I have been on Rebif for four months. I'm have numbness again & little bit of depression. The support I get from my nrse and the hotline are so good. I had just hoped I would feel better by now!

How hard is it to get help paying for Tysabri? How's the support?

Sara

[momof4boys]

I'm glad to report the infusion went well.

A few side effects I did notice-
* Joint pain in my knees. It started the night of the infusion and has been pretty persistent since. It is not terrible more bothersome.
* This one is strange and may not be related but my forehead aches! Literally, it hurt to touch..not a headache. It's better today but started the night of the infusion.

@ Sara- The MS clinic took care of insurance. I never even spoke to BCBS. Since we met our out of pocket I don't have a co-pay! As far as Tysabri support I have not had much interaction. The Rebif group seemed much more involved.

@ Janet- how did your infusion go?

@CougarMama - how did your first infusion go?

@LL60- you are so right, pacing myself is a must! I over did it after I got out of the hospital in January this time I'm going to take my time and do only what is necessary until I feel better.

Thanks again everyone -your encouragement and the willingness to share your experiences is so helpful.

Amy

[Scooter24]

Support should be no problem , call your infusion center that is why they get training for it. Ty does not call every month like the other companies as you have contact with the infusion nurse every month, I do get a call from ty about every 6 months.

[lindaincolorado]

Amy, CougarMama and Janet, how exciting for you that you have started your Tysabri journey

I think last month was #65 -I am very thankful to Tysabri. I hope you each do as well as me, if not better !!

[CougarMama]

My first infusion

Hi Amy and Janet,

I'm glad to hear your infusions went well! I had a slight headache and body aches that started during the infusion and lasted for the next 24 hours (very slight, one Tylenol or Advil every 4hours made it hardly noticeable) and I became very tired during the infusion and that lasted until I went to bed. After Avonex it was a dream, though! And I know after one infusion the effects are not usually noticeable but my energy has been way up.

I also loved meeting with other people who had MS and sharing stories while we were getting our infusions. The other patients welcomed me warmly and I felt very comfortable with the nurses.

Linda-I have read your other posts on your Tysabri experience and they were very helpful! I'm so glad this drug has been effective for you and I hope they continue to work.

[Tinkerbell65]

CougarMama- Congratulations on your first- I had my 2nd last week. I have to say I'm a little jealous of your experience. I go to the hospital in the infusion room and they draw the curtains between the chairs. The upside is that I catch up on my reading

Here's to hoping it helps all of us!

[CougarMama]

Hi everyone! Since everyone on this post originally got there first dose within a week or so of each other I thought I would find out how #2 went for you?

I haven't been feeling well myself but who knows why. It could be the MS, the medicine, the weather, all of the illnesses the kids bring home? I hope you are all doing well and would love to hear about your experiences with #2.

[momof4boys]

#2

CougarMama
I had my second infusion yesterday. Everything went well until about the last 5 minutes when I started feeling itchy. Within 20 minutes, I had hives around my ankles, wrists and on my face. At first they gave me 50 mg oral benydral but when the hives got worse, they pushed 50mg of benydral and 50 mg of steroid through my IV. The hives calmed down about 20 minutes later. I will premedicate with benydral and steroids before my next infusion.

Today, I feel great. No side effects so far !
Hope everyone's infusion went well~
amy