Mid-Infusion Cycle Check-In

Hello!

I’m a week and a half from my last infusion and just a few days from my next!

The first week got a little tougher after my last post. The fatigue set in pretty hard, as did that restless feeling in my legs. I tried to walk on the treadmill a little each day to keep any fibro flare from setting in, but it did.

I had some body pains from that, but I think that it also went away pretty quickly due to the clean eating and exercise regimen that I have been doing since the beginning of the year. Even though I felt like eating a bag of cookies and a bottle of Coke, I didn’t! I have learned that sugar is such a huge trigger for me, and the fear of flaring is greater than my desire to over-indulge and pig out when I’m not feeling 100%.

About a week after the first infusion though, I was pretty much back to where I was the week before, which is great since that is what I call the “old new” me! I have felt the best that I have in 10 years, which is something that I have celebrated each day since the changes started to take place.

Friday I was hurting, but just like the magic that has happened with the last infusions, Saturday was an entirely new day. I felt pretty great and even went to hit some golf balls with Brad (something that I haven’t done in 10+ years)! I don’t know how the excitement of feeling healthy again would ever get old. It is the best feeling in the world.

Since my last infusion had a reaction, and I have been feeling a little itchy on and off since, I emailed Dr. Grandits to talk about anything that we might want to change up for Monday’s round:

Hi Dr. Grandits!
 I have my next infusion on Monday the 22nd and just had a couple of questions, since I had a little reaction last week.
 Do you think that it would be beneficial to do the IV Benadryl in the beginning - or just stick with the oral tablet and hold the IV for just in case?
 I also have a friend who has IV Solu-Medrol before her infusions. Is that something that you think would benefit me?
 I am open to whatever - I just am feeling a little nervous about having anything come up.
 Thank you!
Maren

(Thank you Amber for that information!)

Dr. Grandits responded:

“Yes I would go with both medications in the IV form, Benadryl and solumedrol, to prevent a reaction. I will inform the nurses to do 25-50 mg IV Benadryl and 40 mg solumedrol prior to your infusion.”

So! From what I learned from my last “trip” with IV Benadryl (just kidding), I will want to eat a BIG breakfast before that medication hits my system, so that I can deal with that feeling of levitating out of the chair a little better. Haha!

These experiences can be a little rough, but they are also powerful information to use in the future. I wish that last round would have been a little better, but now I have that knowledge under my belt, so that I can be better prepared in the future. Hopefully this will help me to stay calm and relaxed on Monday.

To make sure that I’m 100% ready for the infusion, I’m also going to lay pretty low this weekend. Focus on getting my exercise in, getting enough sleep, and getting the right nutrients into my body. Prior to the last infusion, I had eaten some junk food over the weekend and had a few beers. The nurses said that definitely could have dehydrated me a little, so I want to make sure that I’m totally ready to rock and roll.

As always, a million thanks to everyone for their thoughts and prayers and for keeping an eye out for information that could be helpful to me. I really appreciate having such a wonderful team behind me.

I’ll keep you updated as to how Monday goes!
M

Rituxan Infusion - Round 1 of 2

Yesterday was round one of my Rituxan infusion.

Things didn't go quite as smoothly during the appointment as they did my first 2 rounds (back in December '15), however post appointment was much better.

My appointment was at 9:00 and we got started right on time. 

About 9:45 I stared having intense, sharp pain from the elbow down to my fingertips on the arm with the IV. After trying a few tricks and one more vein, the IV was moved to my inner elbow.

At about 10:30, I started having an allergic reaction to the medication. My legs started itching, I felt a tightness in my chest and my throat felt a little swollen.

The infusion was stopped and got an IV dose of Benedryl which almost made me pass out. It was intense. I was even slurring.

My Rheumatologist is not in on Mondays, but the on-call Doctor stopped in to check my heart and lungs and look for any signs of a rash on my legs. I was good, so we waited about 40 minutes and then fired the infusion back up.
In that wait time, I wolfed down a huge bowl of cantaloupe, a bag of trail mix, an electrolyte drink and a protein cookie. I think that it helped!

I was done at about 1:30 and out by 1:45. When I got home, I made some muffins, tidied up the kitchen a little then tried to get a little nap in, but I was having the worst leg "twitches" from sitting for so long.
It was driving me crazy, so I ended up walking on the treadmill for 30 minutes, which I think really helped.

I did start to get a little itchy again around 5:00, but taking another Benedryl took care of it.

The rest of the night was pretty normal. I just hung out in bed watching the Olympics. I was feeling a little tired and have had a headache, but have been a million times better than back in December.

I did have a little trouble sleeping last night, because my fibromyalgia (which hasn't been giving me much trouble lately, thanks to eating clean and getting more exercise) was making my heart do the "flip flop", so of course I was convinced I was having more of an allergic reaction and freaking out. This morning I have just have a headache and a hot, blotchy rash on my cheeks and around my eyes. Hopefully that will go away soon, as I get a little closer to the 24 hour mark. 

The fact that I haven't been sleeping and in pain since I got home yesterday (like last time) is really a testament to what this drug has done for me, and how far I've come since then. I'm praying that if this is the drug that is meant for me, that I'll be able to tolerate the 2nd round in two weeks.

I really have felt my friends and family with me through this and that meant the world to me. Thank you so much for the love and support! 

Maren

Great news!

If you haven’t heard it from me already, I was finally approved for my next round of Rituxan infusions! In fact, I have been approved through the next year, so that could potentially be two more rounds!

I just confirmed my appointment for Monday morning, the 8^th. I’ll then have the second infusion on Monday, the 22^nd.

While the anxiety has just started to set in, I am much more excited about the infusion this time around, and less scared.
My first infusion, I was excited yes, but mostly s#!tting in my pants. Once I didn’t die within 24 hours, I started to feel a little better about it ;-)

My most recent lab work showed improvement, however not yet totally in the clear.

From Dr. Grandits:
The labs show normal kidney and liver functions.
The blood cell counts are improving, improving red count and Hemoglobin improved.
The white count is lowish but stable and the size of the red cell is large (MCV) but again stable.
The platelets are normal in number.
Ok to continue your medications.

I have been struggling with my Dermatomyositis rashes, but keep plugging away with the topical medication that I have from my Dermatologist.
I’m only about halfway into the adjustment period for Plaquenil (aka Hydroxychloroquine), so it’s unknown if that is on board or not yet. I keep watching my skin for signs of improvement or at least a steady change, but nothing quite yet.

The rashes have been annoying, but whatever – I’m over it! I’m done wasting energy on them, or worrying about what they look like. If someone wants to think that I have some contagious skin disease and run away from me, then good for them.

DM Rash on Left Shoulder

Warning: No Makeup. LOL
DM Rash on Shoulders, Chest, Face and Scalp. Booo.

DM Rash on Upper Back and Shoulders

DM Rash on Right Shoulder/Bicep

I am happy to report that I have also been feeling awesome! I’m getting stronger every day and building my energy level so that I can do more without getting wiped out the following day (or two, or three)!
I am so lucky that my job allows me to save my energy for activities that I want to do, and also that I have breaks when I need them to get up and move around, or sit down and take a breather! 

I still struggle with little things here and there, but I am leaps and bounds from where I was just one year ago and couldn’t be more proud.
Example: First thing in the morning when I let the pups outside, it’s still a little hard for me to walk back up the stairs and it takes a little while for my muscles to get fired up and moving for the day. My thighs are also still the first thing to fatigue when I exercise. This is a million times better than last year when I could hardly walk up the stairs at all, and needed my husband’s help to move around. So, no complaints here!

So, Monday is the day! I have a few days off of work for each infusion, in case I’m groggy/foggy/not feeling awesome afterwards.
I cannot tell you how absolutely thrilled and grateful I am to receive this life-changing medication again. To know that I will continue to feel better and to improve makes me jump for joy. It feels so great to be able to walk around, be active and enjoy my life off of the couch! I am just over the moon.

I plan to have more great things to report! This weekend will be a fun one, so hopefully it will keep my mind off of any nerves and help me stay focused on the prize and keeping positive.

Thank you for your love and support!
M