It appears that your MSWorld session has not been initiated or has expired. To renew your session, please click here, then click 'Logout' on the right hand side and log back in again.

Go Back   MSWorld Forums > MSWorld Message Boards > Medications & Treatments > Tysabri
Register FAQ Calendar Guidelines Mark Forums Read Login

Tysabri For discussion regarding Tysabri.

Reply
 
Thread Tools Display Modes
  #1  
Old 06-16-2012, 09:36 AM
momof8 momof8 is offline
Registered Member
 

Join Date: Aug 2011
Posts: 49
First infusion on Tuesday

I'm going for my 1st infusion this coming Tuesday and I am just a giant ball of emotion. It seems like everything is really *REAL* now and I finally have to admit/accept that this is happening.
Reply With Quote
  #2  
Old 06-16-2012, 12:05 PM
ru4cats ru4cats is online now
Registered Member
 

Join Date: Dec 2010
Location: Montana
Posts: 236
Talking

I can only hope your 1st infusion goes well. I can remember my first one, and I, too, was a ball of emotion. However, it went exceedingly well, and I had no reaction at all. I walked out feeling exactly the same as when I went in. I will have my 25th in two weeks and am externally greatful to my neurologist for "pushing" me to do Ty. Since it has been my only DMD, I am holding my own, and that is enough. No new lesions, no relapses, and a slowed progression.

I now really relish my two hours where I read a good book. Hydrate well, take a claratin a few hours before, and a couple ibuprophen right before you start. I don't even need to do the last two now.

Don't sweat it, think positive thoughts, and I'm sure you'll do fine. Let us know how it goes.
Reply With Quote
  #3  
Old 06-16-2012, 03:07 PM
momof8 momof8 is offline
Registered Member
 

Join Date: Aug 2011
Posts: 49
ru4cats

Thanks for your reply! This is my first and only DMD also.

What is the claritin for exactly? I've seen it mentioned here & there.

I'm allergic to ibuprofen, wonder if it would help to take tylenol? Is that just to ward off a potential headache afterward?

Thank you for the "cheerleading". I'm mostly just wrestling with the emotion of what it means to actually be starting a drug therapy. I'm not nervous about the infusion itself, more worried about side effects after as I can't be too "out of commission" and still be wrangling the kiddos. Glad to hear that you don't experience ill effects post-infusion.
Reply With Quote
  #4  
Old 06-17-2012, 09:17 AM
ru4cats ru4cats is online now
Registered Member
 

Join Date: Dec 2010
Location: Montana
Posts: 236
Talking

Claritin is an allergy medicine, and it's kind of an "insurance" for "just in case". It's also known in generic form as loratadine. I don't know about Tylenol. Do a search of MS Tylenol and make sure it's o.k. I think ibuprophen is more effective. Maybe aspirin? Good luck!
Reply With Quote
  #5  
Old 06-18-2012, 12:28 PM
KyleW's Avatar
KyleW KyleW is offline
Registered Member
 

Join Date: Aug 2011
Location: New York City
Posts: 245
Tomorrow is a big day! Like you my only DMD has been Tysabri. I had infusion # 8 yesterday. I have never taken anything before an infusion and have never had a side effect of any kind. I do try to hydrate well before hand because it can make it easier for them to find a vein to use.

Here's hoping you infusion is as much a non-event as mine have been!

Kyle
__________________
At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry
Reply With Quote
  #6  
Old 06-25-2012, 10:48 AM
lindaincolorado lindaincolorado is offline
Registered Member
 

Join Date: Dec 2006
Location: Colorado
Posts: 484
I hope your infusion went well please let us know. My first was almost 6 years ago
__________________
Linda
Reply With Quote
  #7  
Old 06-27-2012, 12:26 AM
momof8 momof8 is offline
Registered Member
 

Join Date: Aug 2011
Posts: 49
update

The infusion did go well. I had no side effects, really. I was pretty tired by the time we got home, but I'm not sure if that was related to the meds or the emotional toll the whole thing took.

The nurses were great. When they called me back, all the emotion just overflowed and I started crying. They first led me to a shared room w/another person already there, but then one of the nurses came and they immediately took me to a private room. They were just so kind and considerate and really worked to make me comfortable.

I hope my future infusions are as uneventful.....I doubt that I will have the same emotional reaction and no side effects made this feel like it was a good choice.
Reply With Quote
  #8  
Old 06-27-2012, 09:23 AM
KyleW's Avatar
KyleW KyleW is offline
Registered Member
 

Join Date: Aug 2011
Location: New York City
Posts: 245
Great news. Glad to hear things went so well
__________________
At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry
Reply With Quote
  #9  
Old 06-27-2012, 11:40 AM
REG53 REG53 is online now
Registered Member
 

Join Date: Sep 2005
Posts: 378
momof8, Glad all went well!
__________________
God Bless Us All
Reply With Quote
  #10  
Old 07-02-2012, 10:10 PM
LL60 LL60 is offline
Registered Member
 

Join Date: Jun 2009
Location: Southwest
Posts: 494
momof 8 - glad your 1st infusion went well. I hope your Tysabri path is a great one.

Don't forget that MS causes us to get emotional too. Sometimes at the wrong time.

Sometimes when I go my blood pressure is up and they know that just going there sometimes does that to me and they turn the lights off and leave me along for awhile and I do some meditations and they come back and it back to well below normal.

As a mom of 8 I hope you can use your monthly time to just sit back and relax. Don't even read for awhile. Just sit. And try not to even think. Just enjoy the quiet moments. Try to anyway. Where I go is a very busy chemo place and I find it is hard sometimes and so wear ear phones to block out the chatter and noise of infusion pumps going off all the time. I listen to soft music, sounds of the ocean and meditation CD's.

I am able to go home and go to bed afterwards. I hope you can at least relax and cut down on what is expected of you when you get home.

Keep us posted on how it goes.
Reply With Quote
  #11  
Old 07-16-2012, 04:59 PM
momof8 momof8 is offline
Registered Member
 

Join Date: Aug 2011
Posts: 49
Thanks for the support!

So much great support here, thank you everyone!

Infusion #2 tomorrow. Taking a girlfriend with me. We have to take a ferry to get up to the infusion center, so between travel time and time @ the center, I get almost 5 hours of time with a great friend. For a busy mama, that is amazing!! Actually looking forward to it a bit.
Reply With Quote
  #12  
Old 07-16-2012, 05:54 PM
KyleW's Avatar
KyleW KyleW is offline
Registered Member
 

Join Date: Aug 2011
Location: New York City
Posts: 245
Inside every dark cloud... I had #9 today. All systems remain GO!
__________________
At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry
Reply With Quote
  #13  
Old 07-17-2012, 10:45 PM
momof8 momof8 is offline
Registered Member
 

Join Date: Aug 2011
Posts: 49
2 down.

Feeling ok, just a little tired and a little "off".
Reply With Quote
  #14  
Old 07-18-2012, 10:47 AM
Tomjadg Tomjadg is online now
Registered Member
 

Join Date: Oct 2010
Location: Here
Posts: 458
Good for you. WoW! That is a long trip for you, and probably why you are tired.
I drive 20 minutes, and pay $2 to park for mine.
Just did #15 last week. The infusions are easy.
Reply With Quote
  #15  
Old 07-19-2012, 05:21 PM
lindaincolorado lindaincolorado is offline
Registered Member
 

Join Date: Dec 2006
Location: Colorado
Posts: 484
Wow momof8 ...you've now had 2
I'm glad they went well and hopefully the tired and little "off" passed quickly.
I hope you do at least as well on Tysabri as I have
Good luck
__________________
Linda
Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT -6. The time now is 05:14 AM.