first infusion tomorrow!

[kerpi]

Hi
I'm starting my first infusion tomorrow and i'm excited and nervous! Any tips from seasoned Tysabri patients that will make this go smoothly? I was told to drink lots of H2O and eat breakfast... anything else?

Kerp

[LL60]

Congraulations on joining the Tysabri family. And it really is like family here. So many good hints and great information here. And lots of support.

I also lift weights. 7 lbs. I have small rolling viens and that really does seem to help. Drink a lot the days around the infusion and the days after. Only once this summer I think I overdid the drinking and sort of had a rough time. You can drink TOO much water you know.

I take a blanket. They have warmed blankets there which is really nice, but I like my nice thick one from home. I also take tapes. I took a book once, but it is sort of noisy sometimes and hard for me to concentrate to read. So the tapes work well. The pre meds make me sleepy so sometimes I sleep about half the time.

I had someone take me and pick me up that first one. (I just had #19) But I just drive myself now. It is Friday traffic, so everyone is going slow anyway. I also asked them to do the first one slower since I didn't know how I was going to react to it. They added 15 mintues to the drip.

After awhile mainly it is boring. There are a lot of people getting chemo where I go, so I lay there thankful that I "only" have MS.

Have them give you a pillow for you back. That helps. They use a heating pad on my arm for about 10 minutes. They think that helps them start the IV better too.

Have a good day tomorrow. And let us know how it is.

[Johooper]

I had my first one yesterday and had no problems. I am a little worried about it all but the infusion went off without a hitch and I feel fine today.

Ours is done with 1 hour for the tysabri and 1 hour wash after,

Jo

[kerpi]

didn't go as planned

Well last Friday didn't go as planned. I first missed my 6 am bus... but had my dad drive me to the infusion 3 hours away. I got there on time, but then waited... and waited and waited and waited... they warmed my arm, offered me coffee and cookies.... did the questionaire... and waited and waited and waited.

Someone forgot to date the prescription, and they were unable to give me the infusion despite them actually having already filled the prescription and booking my appointments...

OH well... the infusion center that i'm going to is a private clinic... the staff is wonderful and my mind is eased by this.

Maybe they will rebook me after xmas and things will get started then.

Kerp

[lindaincolorado]

kerpi, sorry I'm answering late I would've said bring something to do-I bring a book, other than that you got good info !!
I hope it went well and that you do well

Jo, glad you had no problems !! Why are you worried ?

[Johooper]

My main worry is obviously PML. I also question the reason why I decided to go on it. Compared to some on here I seem to be traveling really well. No major relapses in 18 months. I was going to go on it 18months ago and changed my mind and switched to copaxone. I did get one new lesion in my spine in this time but within the first 6 months so not sure if that was just down to the switch. I had a MRI about 3 months ago which showed nothing new but re demonstration of old lesions. I have 6 on my spine and I worry about these more than the brain ones. I also have terrible problems with my right eye since I had ON 2 years ago. After reading up on other peoples experiences the consensus seems to be that people who eventually go on Tysabri wished they had gone on it earlier to prevent it getting to the stage they are at. This was my deciding factor really. I didn't want to get to the stage where I say, I wish I had.

Anyways I have done it now and I am going to give it 12 months and re-assess then.

Hope you get yours soon.

Jo

[workinmammaof2]

similar story

Jo - I have a similar history. "mild" disease. Minimal clinical deficits - mainly only sensory. I have had a few lesions in my spinal cord, some in my brain, but pretty mild. I am, too, worried about the cord! I was doing well on Copaxone until last year when I had 2 separate new cervical cord lesions. I switched to Rebif and I am not tolerating it well at all. Constant side effects. I know I need to be on something and need to prevent more disabling lesions - going to give Tysabri a year and re-assess as well!

Good luck!

Kerpi - good luck! I am supposed to get my first infusion on Dec 22, so we will be close together.

[lac4x9]

Kerpi: if you live somewhere with cold weather, make sure you bundle up for the trip there. In the summer my infusions go just fine, but when it starts getting cold outside and my core body temp drops, my veins get much harder to hit. One time when I was really cold the nurses missed a number of times (I wont tell you how may), and I knew it was because I was too cold (my body temp was 95). The next time I wore a t-shirt, sweater, hoodie, my coat, gloves, and a blanket on the way to the infusion center, AND I had my heater going full blast. Needless to say, I was sweating when I got there. However, my veins stood right at attention and the nurse didn't have any trouble sticking me.

[kerpi]

take 2.... but still on the first

Hi I go on friday for Number one.... again

I had a scare over the holidays... some sort of cold virus that effected my eyes... i forgot that i didn't have my contacts in (i have the kind you sleep in) and when i woke up my eyes hurt and i couldn't see! My first thought was Optic Neuritis again! I am nervous about Tysabri and pml, but i am certain that staying off meds is not right for me.

The scare made me aware of how afraid i am to progress...

I'll keep you posted.

Kerp

[mommyHeidi]

I bring a book and my lap top, makes time fly by! They have TV's there that I can always watch also but I like the quiet time. I call it "Me Time" since I am a stay at home mom this is pretty much the only me time I get

Good Luck with everything, I have been on Tysabri for almost 3 years now and it has been the best thing for me.

[kerpi]

One down

Hi
Well that was a piece of cake. Was a little chilly, and had a nap after... also felt a bit dizzy right after... and a mild headache ...now i feel normal. (like i did the day before)

Sooo number 2 is booked for Feb 4th....



Kerp

[kerpi]

more

sooo i guess i should mention that i roasted myself on the way there - it's winter here so i had the heat high all the way in during my drive... 3 hours. I also drank plenty of water... ate breakfast... and took a cold drink with me.

when i got there the nurse took temp, blood pressure, pulse... did the questionaire and put a heated flax bag on my arm to warm it up.

She did a great job inserting the iv - first try and taped it down really well! (thinking of iv's makes me squeemish) I felt a coolness in my arm as the iv flowed, so i covered it. (might be because of the windows beside me)

She took my vitals 5 times over the 3 hours. She offered coffee, tea and cookies...it was a private suite, with tv. The history channel and scrabble with my bf passed the time.

The nurse was in the area the entire time and made this experience very good. Cloverdale Infusion Center was fantastic!

She even called me at home last night to rebook an appointment because she wanted to keep me on fridays, and she switched her work week to accomodate the schedule.


ok that's what it was like...
Kerp

[jersey-in-pa]

Yea for you Kerpi I've been on for 8 months, my 9th is Friday. I have developed a "friendship" with my IV nuurse. We both "hail" from Jersey so we have ALOT in common. Attitude, sarcasm, eyc. So that's comforting to me. She is a credit to her profession. She loves her job, she DOES her job and I can see she's really competent/confident at what she does for a living! I hope you have the same sucessful experience w/ your Tysab inf's. Drink lots of H2O all the time! We're all in this together.
Light & Love,
jersey

[kerpi]

Number 2 - almost didn't happen :S

So no. 2 was Friday the 4th of Feb. It almost didn't happen because not only were the roads closed, and the bus left really late... but... the bus actually CRASHED!!! I ended up getting later appointments (twice that day) and had a friend pick me up. Once i got there... it went fantastic.

I feel better than last month - NO HEADACHE! I am feeling more energy too. (mind you january was a bit of a busy month for me... filled with going back to school for a week, living away from home for that time, and all the stress in my life from divorce and singlemom hood... ) WHew... glad i'm feeling better!

kerpi

[lindaincolorado]

kerpi, so glad 1 and 2 went well with 2 being even better
Hope it is a great med for you !!