Roid Rage – IVSM recap

Last week, I spent 3 days doing outpatient IVSM (IV Solu-Medrol) at DMC.

Overall, it was uneventful.  Each day, I showed up, got prepped, and sat back for a few hours to infuse.  As usual, the worst part was (drumroll) vein-finding!

Day 1: Showed up at 3:30 (no appointment necessary).  After almost 2 hours of waiting, got the catheter done in 1 stick, but we couldn't leave it – it was exactly in the middle of my right elbow bend.  Krismas brought Mexican food and entertainment, and we weren't done until 7:45 pm.  On the bright side, I didn't have any side effects, aside from that nasty metallic taste in my mouth.  I'm learning about the elastic nature of time in a hospital.  2 hours of infusing doesn't include the hours of waiting before hand!

Poor Little EJ
EJ kicking back
IV tree
Kris eating chips

Day 2: 2 sticks. The first stung and occluded after about 8 minutes — I don't think it ever quite hit the spot. It was in the bend of my left elbow, so I couldn't have left it anyway.  The nurse got a better vein in my left wrist, though it hurt a little more than the elbows.  I tolerated the infusion well the first day, so was allowed to speed up to 1.5 hours of infusing.

Day 3: 4 sticks, and the thrill is gone.  Three nurses took 45 minutes to find a vein that might work. I'm black and blue and green and purple all over.  They tried: back of my left hand, central right forearm, left wrist, and finally, right wrist.  Enough was enough!  Another 1.5 hours of solution, and we made it out while the sun was still up.  Mom came to sit with me, to give Kris some time off.  She got me barbecue fritos from the snack machine for the bad taste. 

Afterward, though, I was sleepy.  And I had heartburn; took a zantac.  We went out to dinner, but I went to bed early about 9, totally wiped.

Then the side effects really started. I was fatigued and irritable.  More heartburn, more zantac. My back was stiff (spasticity), and by the time family visitors left at 3:45 on Saturday, I fell into bed.  Got up a few hours later to take Kris to dinner, watched an hour or two of Britcoms, but dozed some.  Woke up halfway through the night when Lula barked, and my back was still stiff (a new record) and my neck was very sore.

When it was time to get up Sunday morning, my neck pain had deepened and spread around my whole throat, neck, and shoulders.  It hurt when my hair touched it!  And bra straps, barely on, were very painful.  No fever, though, which is good.  Apparently, the IVSM has a dampening affect on the immune system, which I hadn't been told. And we'd gone Saturday morning to Goodwill, where I'd been surrounded by all those Typhoid Marys — eek!

Monday night, now, and my back is still tight, neck still sore. My face has also started breaking out in weird places — what kind of unfair side effect is acne?!  I generally feel like a puffy, ugly zombie.  I am tired beyond belief, it hurts when I try to lie down, and I'm kind of sad.

On the bright side, the numbness in my right side is much less and my balance seems steadier.

This type of treatment has serious long-term side effects, and even pretty rough short-term effects as well.  (There are some people who do it every month!)  I don't plan to do another round, but it could happen if my symptoms flare up again.

What's next?  I have a follow-up appointment with Dr. O on Friday morning.  It will be my first chance to talk to him in-depth about the scans, tests, and results from the last few weeks.  I am torn between hoping he makes a diagnosis and hoping he does not (chronic disease vs the unknown, round 2).

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One thought on “Roid Rage – IVSM recap

  1. bostontaylor says:

    You and Kris are truly amazing.  I want to see you both some time very soon.  I was sad that you weren't able to make it to Crystal's, but maybe this Sunday we can do something?  Movie at your place maybe (it's my day off)?  Smooches and hugs.

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