Friday, August 19, 2016

Mid-Infusion Cycle Check-In


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!

(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!


  1. Hi Maren. Thank you for posting your very detailed account of your experiences with the different drugs. I have had Dermatomyositis for 3 years but do not have any serious muscle issues. My skin disease has become harder to control and I am being forced to consider other options to using methotrexate and steroids. I really appreciate the info since so little is available. I am considering cellcept and some others. It's all a little scary and it's difficult to make informed choices about drugs whose side effects are things like lymphoma. I hope you are well and wish you all the best. Thanks again. Kim.

    1. Thank you for the kind note, Kim!

      Yes - I understand that it is certainly scary when you first take the step to control the disease systemically (with medication).

      Controlling the skin symptoms is so dang tough - since in my own case, I tend to develop sensitivities the different topical drugs over time... or - they just stop working for me!

      I totally recommend finding a great dermatologist who can work with your rheumatologist to troubleshoot and think outside of the box to help control the rashes and Gottron's Papules. The collaboration between my two doctors has been an incredible blessing for me, especially since DM can be so tricky!

      Wishing you all the very best!