Any tips for my first infusion?

[JBWInColorado]

My first infusion will be in a week or so and I'm quite nervous. My best friend will be out of town so I am on my own. Wondering if I should drive, or take a cab? Should I take a valium? Anything else to combat potential bad effects? Should I eat before hand? Drink my coffee? Take munchies with me?
Any suggestions to make it more pleasant and stress free are appreciated!
Thank you!

[LL60]

Hi JW -

There is a tread on what each person encounters at their own infusion site. I am always amazed at how different each infusion center can be. I can only share my experience.

Be very hydrated. I drink a lot anyway, but am extra careful to drink a lot the day before and morning of the infusion. I have small rolling veins and the last thing the nurses need is for me to be dehydrated.

I had my husband drive me that first infusion 5 years ago. It was boring for him and I felt like I needed to keep him entertained the whole time, so I go alone now. Where I go, the standing order is Benadryl and Tylenol. I did find that 50 mg of Benadryl did made me a little sleepy sometimes on the drive home, so I had them only give me 25 after awhile. The Benadryl is to cut down on any minor allergy reaction you may have. I never had had one, so now just politely refuse all pre meds.

The first night after my first infusion I woke with a terrible headache. Once in awhile the first 6 months I would get this midnight headache on the night of the infusion. I do not anymore.

I take meditation tapes with me to listen to. Sometimes I sleep. From check in time, to answering the questions and signing the paper, getting the iv started, waiting for the Tysabri, getting the one hour infusion, waiting the one hour afterwards - I am there about 3 1/2 hours. I use to take a snack, I don't anymore. I do take a bottle of water and I drink it in the car after the infusion.

I go home and usually go to bed and sleep for a few hours. The day after my first infusion I felt very strange. To this day I can not describe it, nor have I ever felt that way since. I got a burst of energy that lasted about a week, then slowly the energy lasted as long as 3 weeks. I don't get that burst anymore. Just sort of stay even, with fighting fatigue a little more than I use to.

I have never had any side effects other than the headaches the first 6 months.

I had a relapse at 3 months on Ty, but after 6 months it was obvious to all my doctors and to family and friends that many of my symptoms were going away. This drug has been extremely helpful for me. I just wrapped up my 5th year.

I was also very nervous that first time. I did ask the nurse to please run it in slowly since it was my first time and we had no idea how I would react. Instead of 60 minutes, she ran it in at 75 minutes.

I always had mine on a Friday, thinking I may need the weekend to "recover." I now have them on Tuesdays. I don't need any "recovery" time and I didn't like losing my Fridays. I go right back to work the next day, no problem. Some have them in the mornings and go right back to their jobs in the afternoon. I do feel very tired afterwards and find I can't do that.

You will find what works for you and make adjustments. I would take a cab that first infusions, just for piece of mind, even though you probably wouldn't need to. I would not take any medication first unless you cleared it with your doctor. Take something to do, a book, your computer or ipod. Sometimes during a stressful time of year, I find it's nice to have 3 or 4 hours to just lay in a bed and "chill out."
(I usually ask for a bed - I do not like the chairs! After 3 hours my back is killing me sitting in them.)

Hope this helps some. Let us know how it goes. Tysabri is a very very good drug for MS. Many, like myself, find it has made a huge difference in their quality of life. Each person reacts in their own way. Go in with a good attitude and enjoy some quiet time.

[lindaincolorado]

I, also, hydrate and the morning of I do drink a cup of coffee-it plumps up my veins

If I didn't eat I bring a Kashi bar with me.

I bring a book because I enjoy reading-it is a relaxing time for me.

I drive myself.

I have never needed to medicate, so side effects except every great once in awhile a bit of headache. Sept will start my 9th year

I hope you relax (take a few deep breaths)-I do not think a valium will be necessary. Do you drive o k if you take a valium?

I hope you do at least as well on Tysabri as I have !

[JBWInColorado]

Thanks ladies - very helpful.
Is the needle big?? Like when you get an IV or like when you get blood drawn? I'm ok with needles but can't say I like them.

[KatieAgain]

I was exceptionally nervous the first time. I did not sleep, ate only a banana and drank a Mt. Dew. That caused a few issues.

I just had #10...and I have the routine down. I eat a nice big breakfast and hydrate...I drink water and save the caffeine for later.

I did get tired on the first infusion and many times I do come home and nap for a couple hours. Only headache was the first infusion.

I drove myself...visitors are not allowed in my infusion center...only patients. They infuse me with Benedryl prior to each infusion. And I have to wait for blood work results.

I take my IPAD which has my reading material and Netflix. I also take a light snack such as grapes or nuts.

Good Luck on your first infusion. I too hope TY works great for you!

[LL60]

It is an IV, so the needle they use to start it can be different. They use "butterfly" ones on me because my veins are little. In 60+ infusions it has only been painful twice, each time was when they hit a nerve. Both of these times have been in the back of my hand.

The worse part for me, as far as painful goes, is always the removal of the tape taking everything off. Even using the tape dissolving little swabs. They now use the brown tape that only sticks to itself, not to you.

It's a learning experience. You will work out what is best for you.

[ru4cats]

I agree with all the ideas presented in this thread. In regards to infusion needles, my nurse also uses the butterfly, and I highly recommend it. After two terrible sticks in my hand at another infusion center, I made a new rule, "My money, my stick!". If you have a vein that you know works for you (mine is inside the arm opposite the right elbow), then that is the one the nurse is told to use. I've had some nurses question overuse of that vein, but after 52 infusions I'm still going strong.

I consider my infusion day a day for me! I begin with a haircut, then I'm off to a breakfast of eggs benedict at a local restaurant (extra salt helps increase fluid intake that helps with my lower blood pressure), and then my infusion. Keep calm and enjoy "your day".

[lindaincolorado]

how'd it go

Hi JBWInColorado,
pretty sure you've had your first so, how'd it go.. I hope great !
I go to the RMmsC at Anschutz on Colfax and think they are wonderful
please let us know