Tysabri: Take Three

  It's that time again!  March 19th marks the day of my third Tysabri treatment.  I've noticed a couple of differences between this time and my previous treatments.

1) The period leading up to my Tysabri.  In past treatments I was having major, sharp joint pains and muscle aches in the three days leading up to Tysabri.  However, this time I only had an ache in my right ankle.  I did not have any major muscle aches in my hands or feet! (Third time = Pro)

2) The placement of my IV.  In every past experience I've had in the infusion center my IV has been located on my left forearm.  This includes my three days of steroids and two Tysabri treatments.  Unfortunately, my nurse was unable to locate the "big, juicy vein" that the other nurses used.  She stuck me on the inner arm bend of my right arm.  This was not a pleasant experience.  Any movement that I made was worse than in the past.  I have a theory that this is because I'm right handed and when I need to do something, I instinctively reach out with my right arm.  Also, the twisting motion of my right arm seemed to be more painful that when the IV was in my left forearm. (Third time = Con)

  (Can you say... OWWW!)

3) The LFT (Liver Function Test).  In times past, the lab has always been very busy, so I have to work around its schedule. This means that I will go down to the lab after my infusion is over and have blood drawn or the lab tech will come up in the middle of my transfusion and take my blood then.  This is the first time that the blood was drawn from my IV site before the medicine was hooked up.  And I'm pretty sure that this is the way the infusion nurses and lab techs prefer to take my blood.  I also prefer this method: I only get pricked once!! (Third time = Pro)

4) During the transfusion I experienced two new things: 1) I had to powder my nose (that was an adventure, especially the belt) and 2) I fell asleep. While editing posts. While watching Twilight. 

 (Check out that angelic appearance, yes, I'm an angel)

5) Post-transfusion reactions.  Normally, I am full of energy (for about three hours) and then proceed to be on ups and downs.  AKA:  I'm the Energizer Bunny for three hours and then I'm Sleeping Beauty after she has eaten three Thanksgiving dinners worth of turkey and is experiencing a tryptophan overload.  This time I noticed that I still have the ups and downs, but I'm also experiencing excess joint pains that were not there before.  I also have weakness in my hands.  (These are the symptoms that usually occur leading up to the treatment, not following the treatment). (Third time = Con)

Anyway, when it comes down to it, this was not my favorite transfusion.  But! It's over, that's that.

Heart Stopper

Confused:    The moment when your eye lid begins to twitch, but you don't realize what is happening.

Scared:  The moment when you realize that your MS could make this a normal thing to start happening.

Distraught:  The series of potentially blinding eye squeezes you perform to stop this madness!

Hysterical:   The beginning motions of poking your eye to get the twitching to stop.

Thankful:     The moment where you realize you just spent 30 seconds flailing like an imbecile.

Embarrassed: The moment when you realized if you had only stopped freaking out, you would have noticed that your eye twitched once.

Moral: Step back, re-evaluate your potential problem, create a plan (preferrably one without flailing arms, violent eye blinking, and dizzying eye pokes), and then attempt to fix the problem (which probably seems a lot less difficult/deadly/impossible now).  THINK BEFORE YOU ACT.

"The secret of getting ahead is getting stated.  The secret of getting started is breaking your complex overwhelming tasks into small manageable tasks, and then starting on the first one." -Mark Twain 

Tysabri: Take Two

Tuesday, February 19th.  It's my second treatment with Tysabri!  I could tell that it was time, because my joints were very achy and my hands were losing the ability to hold things and I couldn't open the basic bottles and bags.

Before you are allowed to recieve the medication, you need to answer the following questions:

1) What's your name?

2) What is your birthday?

3) Have you had an organ transplant?

4) Have you recieved chemotherapy?

5) Do you have any infections?

After you have answered all of these questions, the nurse is free to check your blood pressure and temperature.

Check out my low blood pressure! (Thanks for the low BP mom :) )

After that, the nurse injects the medicine (Tysabri... all $6,909 300 mg of it) into the saline solution bag.



Notice that there are actually two bags in the picture below.  One of the bags has the medicine, the other is full of only saline solutions.  Apparently this is necesary, but I'm convinced this is BioGen's way of keeping me in the hospital for one hour after my actual transfusion to ensure that I'm not having adverse side effects from Tysabri.  (I, for one, don't want to pass out or have an allergic reaction while driving home). 

Then I get poked!  My transfusion nurse, Janice, is aMAAAAzing at inserting the IV with no pain.  But she tends to give me all the credit.. saying that because I eat breakfast and stay hydrated keeps my veins nice and plump!  We usually go on my left arm, apparently I have a big bloody vein just ripe for the sticking!

Told ya, I was a bleeder: (Beware, picture including blood)

Here come the saviors of the transfusion:  SKITTLES!! (The saline solution tends to leave a metallic taste in the patient's mouth.  To me, the metallic taste mostly affects the taste of water, so I eat Skittles to get rid of that taste).

No more blood! And I'm happy as a clam fat kid with cake!



Obviously, I use various apple products to keep myself entertained for the 2 hours the transfusion takes!

*Update: I think I'm actually attempting to get the app "Bump" to work between my phone and my mom's mini so she would stop sending me emails every three minutes*

At some point during the transfusion I need to have a LFT (Liver Function Test) to make sure that I'm not experiencing liver damage from my meds. (It is because of this reason that I have given up drinking, I do not need  alcohol to have fun with my friends, so I'm going to give my liver a break and stop drinking)

My right arm is the site of the blood drawn for the LFT (didn't get a picture of that happening, because mom was too slow and you can't really take a picture of oneself when you are strapped with medicine in one arm and you are getting stuck in the other arm)

Time left: 0.01!! And then it's time to go home and fall asleep (for hours)!!

If you have any questions about Tysabri, my experience, or just want any additional information: leave a comment :)