First Infusion of Tysabri

[a.nukem]

Well all of the paperwork has finally been pushed through. It seems my Dad's insurance is covering 100% of my Tysabri so they have scheduled me for this Friday the 14th for my first infusion.

The good news? I received a call Monday with the JCV test and even though it seems I've never had good luck with medical tests... for the first time I received the test result I wanted. I'm JCV- .. I prepared myself to be positive due to the statistics on it and I was still going to take the risk. It gave me such a high to know that for once it was going my way.

With all of this positive, with all of the good energy flowing, why am I afraid now? Now that I have the date set for my first infusion. I've been pretty okay with everything and haven't been frightened much at all with all of the changes.... but why now? And why is my depression kicking in full force now of all times?! So much good seems to be balancing out with bad which.... well frankly it just ticks me off! It's like the universe is against us but we have no choice except to fight back. I'm confused on dealing with it all.

Is it the change happening faster than I expected? Have you all dealt with this and is it better after the first infusion is over? Anyone have any suggestions on how to make the first infusion go easier? I hope you all are doing great and I've missed being more active on the forums. This place is a lifesaver.

[Mynamegoeshere1]

Hello

I am no help, but I am in your boat also. There have been several issues with my Tysabri start date. The first one, the insurance didn't go thru in time. The 2nd one, I had a lump in my breast that had to be checked out which turned out to be a cyst and is ok. Now everything is in order and my date is set for next Wednesday. I, too, am negative. My nerves are fresh though as they were when I first was making the decision to possibly try Tysabri. I am nervous, but I also know that I have at least the fact that I am negative going for me. I know people told me to make sure I stay very hydrated the day before and the morning of the infusion.

I am not sure if you work or go to school, but they said some go right back to work, but some go straight home to sleep. It all depends on you and your body. I am on disability so I know I will go to sleep period. I am also going to try to eat something before as well if my nerves allow it. This is a very scary decision, and I imagine even scarier for you as you are even younger than me. When are you scheduled for?

[22cyclist]

Tysabri

Be ready to hang around the infusion center 1-3 hours depending on how it goes. Bring your blanket that Biogen sends you- if you didn't get one, bring a small airplane blanket, a caffeinated drink ( to ward of headache).

You will be given Tylenol and Benadryl prior to the infusion, so just take a little snooze while it goes in.

You can go back to work if you are not too effected by 25 mg of Benadryl. Otherwise, take the day off.

This stuff in no way makes you feel like the interferons so if you lived through them...you will be fine.

It is a breeze.

[Special Kay]

What is the blanket for? Is there a reason the infusion would make you unusually cold? It seems odd to me to need to huddle under a blanket in the middle of the day.

I'm cold all the time, but I usually just take a sweater with me (like going to the movies, etc.)

[LL60]

Most of the infusions are pretty cool - temperture wise. I bring a blanket from home and use it almost everytime. They also have warmed blankets there too. If it is 100 outside, it is still about 73 in there I found.

It is one hour for the infusion and one hour to watch you. That is the rule of the touch program, and my infusion center is extremely strick about that, but some here have said they go home after the infusion is in. I am there from 2 1/2 to 4 hours depending on how busy they are.

Drink lots of

[msesq]

I'm scheduled for my second infusion tomorrow. I agonized for weeks about whether it was a good idea. I'm really glad I did!!!

With the exception of the last few days (I heard that some people get tired the week before their next infusion), I feel great! So much better than I did on Rebif. I took off tomorrow, but moving forward if I feel good after tomorrow's infusion I'll be going straight to work.

[Special Kay]

Most of the infusions are pretty cool - temperture wise. I bring a blanket from home and use it almost everytime. They also have warmed blankets there too. If it is 100 outside, it is still about 73 in there I found.

So basically, like your standard air-conditioned office, mall, movie theater, etc.? I'm still baffled about the need for a blanket if I'm dressed normally.

Oh well.

[pb909]

Best wishes to those just starting, like others I was nervous at first with the unknown. I've been on it now long enough that it is really no big deal.

I work out of my house and work either before or after my infusion. But I do not get Tylenol or Benadryl prior to the infusion.

I get mine at my Neuro's office and the a/c is probably around 72 degrees. I go in shorts and a t-shirt and I'm fine, but there are sometimes others bundled up next to me so it really is how you personally deal with temps.

[a.nukem]

Awesome. I will definitely drink lots of water. I'm scheduled for 10am tomorrow morning and it is a hospital outpatient center so I know it will be dreadfully cold. I imagine it's just like when I was getting the steroids after I was first diagnosed and I will probably get colder than normal so I will definitely take my small travel blanket. Tysabri said they were sending me information and a blanket (which confused me at first) but I haven't received anything yet. I think I will call in the morning to see if they do the benadryl and tylenol beforehand or if I need to take some. I actually have off work so I'm going to come straight home after I'm done anyways and probably take a nap since I won't be taking my nuvigil before the infusion. You guys are the greatest. I'm feeling more prepared to take this bad boy on now. ^_^

[a.nukem]

I just wanted to thank you guys again. My first Tysabri infusion went great. I was exhausted afterwards and slept most of the rest of the day and all night long but this morning I woke up and feel pretty good. I didn't need benadryl and I had taken some ibuprofen right before because I had a pretty bad headache but it wasn't a big deal. I only have a tiny bruise and I'm just so happy it went great. Thank you for all of the good advice. Taking a blanket and drinking lots of fluids probably saved me a lot of hassle.

[moolk]

So basically, like your standard air-conditioned office, mall, movie theater, etc.? I'm still baffled about the need for a blanket if I'm dressed normally.

Oh well.

I think it is because the hospital rooms are kept pretty cool. I always take my blanket...sometimes I need and other times not. I'm usually there for 3 hrs so it is nice to have one if you want a little nap.

[lindaincolorado]

I'm glad it went well Good luck on your Tysabri journey !