My Journey with Benlysta- Infusion #2

Infusion #2- My Journey with Benlysta!

Good Afternoon to you all, and I hope you are all preparing for a happy and healthy (I use the term loosely, but nonetheless...) Thanksgiving coming this week! My Turkey Day week started off with my second infusion of Benlysta, the 2nd of the first 3 that are given in the first month as the loading dose, to jump start the process! After that it will be given once, monthly- now I am no fan of infusions but for the timing being it certainly beats adding another pill into the already ridiculous routine ( at last count it was 32 pills a day- ABSURD and working to get that number way down -beginning with getting off the dreaded and yet beloved- PREDNISONE!)

The infusion, however is made so much more pleasant due to the lovely nurse Debbie, whose bedside manner is immaculate, and who truly makes you relaxed and comfy for the entire process ( I mean the Pre-infusion Benadryls help take the edge off too- LOL)! Things went smooth with the infusion, and I was a bit concerned as to whether or not I would be able to get my second infusion as scheduled due to a recent stay at CLUB H (the trendy Hospital in town). It's all the rage this fall season and has all the latest trends from the hole-y hospital gowns that apparently are only made on triple XLs, to the latest in food (on the all liquid diet- it was all the rage in hollywood too last year!), from yogurts to soup broths what more could a gal want! But my colitis is calming down, I am on the mend and we were able to get the go-ahead from my Rheumatologist to move forward with the infusion!

Once I was hooked up to my mock-tail (medical cocktail), it took about an hour from start to finish, and I was out the door and on my way home to sleep off the Benadryl (it always makes me a little more Loopy than usual!) And aside from the day after mini-hangover feeling and headache I have had minimal side effects from the Benlysta and am very happy with how I have tolerated it thus far. My next infusion, the last of my loading dose is schedule for December 5th, 2011. Wish me Luck and have a fantastically silly Thanksgiving full of spoons!

Infusion Number One- My Journey on Benlysta

Yesterday, Monday November 8th, 2011, was my first infusion with the newly FDA approved Lupus Drug, Benlysta. (For more information on Benlsyta click here!) I have been in the process of starting it for about two months now between the insurance authorizations, pre-approvals, consultations and then finding days to schedule infusions around my graduate courses and my poppa bear's schedule as well (Yes he was the DD- Designated Infusion Driver) for the first session, as it is typical that they give you both Benadryl and Tylenol prior to your infusion to minimize any allergic effects from the biologic agents being infused into your body. The Benadryl hit me rather quickly and I found myself feeling a tad Loopy before we even began the infusion! However, it also relaxed me a bit and calmed those pre-infusion nerves I had shaking me from the inside out from the nights leading up to the day of the infusion. It's not that I was scared, or fearful, but more anxious to start a new chapter in my Lupus Journey that thus far, has been such a roller coaster of ups and downs and loops,swoops and pulls and turns in every which way, like something out of a Dr. Seuss Story, as I am sure many of you can relate with your own journeys with your chronic illnesses, regardless of what they are.

We arrived and I had already filled out the necessary paper work prior to arrival to keep things moving right along (and no worries I was equip with a Vitamin water and XL Iced Coffee from 711) along with a bag of peanuts (thank you pops), and some very comfy clothes as I was not sure how I would feel afterwards, and had plans that consisted only of coming home and resting/sleeping off the Benadryl. I was taken back after what seemed like 3 hours of waiting in the waiting room (where they had an entertaining bit on the "Rhuematology Network" about celebs with Lupus), to the infusion room which had three lovely ladies that were already hooked up to their mocktails of choice for the afternoon. Grease was playing on the TV, and nurse Debbie was ready to get me going. As you all know the worst of the worst is simply putting the IV in, once that is done it is smooth sailing (generally speaking), and other than some minor side effects (headache, rapid heart rate and some wooziness), and another half of an old school movie (Superman this time, because naturally after Grease we needed something a bit more up-to -date?)

Before I knew it my coffee was gone (I needed more than an XL apparently because it was doing nothing to combat the sleepiness from Benadryl), My infusion was coming to an end, my pops was brought back to the infusion room and I was escorted home to my very comfy and very oversized Big Chair (see: Ode to the Big Chair post from Summer 2010, followed Ode to the TV Pillow for Costochondritis), where I planted myself for the remainder of the evening.

My next infusion (as we are doing the loading dose) will be in another 2 weeks, Monday November 21st, 2011, which will be followed by my last loading dose (3 in the first month), on December 5th, 2011. From that point on I will receive my infusions once monthly, and hopefully within 4 to 6 months start to really take note to the improvements that I am hoping Benlysta offers me (Fingers crossed if all goes according to "plan!")