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Thriving Benlysta Warrior!

Tags: layer pain cake


Infusion #4 - Completed!


This week I completed the "loading phase" for Benlysta IV infusions and am feeling quite a sense of accomplishment!

This week was my 4th infusion and going forward will be on a monthly schedule, instead of every 2 weeks.

Notable - for the first time in a long time I wasn't limping on my left foot/ankle/leg/hip!  The usual stiffness and pain is still present, but not the added layer of discomfort.  Pain is like a cake …. the inside cake-like section is there, but then you add the frosting, a second layer of cake and frosting on top of that!  Layers of pain are similar to layers of cake …. I continually adjust to a base level of pain that I live with on a daily basis.  But, when flares occur or inflammation increases in various joints, it adds a "layer of frosting" on top of the base layer of cake. You never know when the layer of frosting will go away or if another layer of cake and more frosting will be piled on top.

I use the analogy of cake because I love dessert and have a major sweet tooth!  I'm always thinking about my next trip to Bruester's for ice cream.  Mind you, everything in moderation is a good thing and try not to let your occasional treats and indulgences become obsessions … or, you'll be dealing with another problem! LOL!

So, back to my "notable" comment about feeling less pain when walking on left foot.  It could be the direct result of my recent steroid injection a few weeks ago, or it could be the start of the Benlysta taking affect.  It's never a black and white conclusion, so I make a mental note of the improvement in pain levels and document it in my Benlysta symptom tracker.


When you live with a chronic illness it's important to keep track of your pain levels and any corresponding symptoms.  That way you can report to your rheumatologist or pain management specialist and adjust your meds accordingly.

Post Infusion #4


This was the first infusion without administering a steroid intravenously.  As I previously mentioned, the first 3 infusions contained a steroid just in case there was a reaction to the Benlysta.  I'm very pleased and blessed that I haven't had any major side effects, thus far!

I've experienced a few minor side effects; such as, a slight achiness in the infusion arm, some achiness in the calf & knee/leg area that dissipated after few weeks and fatigue/sleepiness after the infusion.

This week, I did experience some extra fatigue post infusion.  So, instead of ignoring it I came home and curled up on the couch with my pup, Giggles …. when she's with me, everything just seems better!!


Giggles on Mexico Beach!




This post first appeared on Arresting Lupus, please read the originial post: here

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