Tuesday, December 02, 2008

Monthly Infusion #1

I wrote this on 12/2 and forgot to post it. Woops! I guess that's a good indicator of how I've been. Scattered and sleepy. My December insomnia has kicked in full force which triggers all my MS symptoms. I've dropped a full gallon of milk, many cups of coffee, and I keep feeling like my hands and feet are asleep. I've turned the tides, though, and slept 7 hours in a row last night!

Today was the first of my monthly Solumedrol infusions at the new MS clinic. The best part was that they had wireless so I was able to answer work email and play a little Wordscraper during the infusion. Ok. The Wordscraper part was fun. The work was...well...work.

My nurse was Debra (that's her headshot from the Website but she is much more animated in person). She was very nice and knew her way around an IV. Good thing, too, since I only let them screw up once. I learned how to set that boundary when I became a pin cushion during my 5 1/2 week stay at the Villa de New England Medical Center when I was waiting for Zane to be born.

But I digress. It was really nice to know that all the other people in the room had MS. Well, sort of. It wasn't that fun seeing the people in wheelchairs and with canes, wondering if they were once mobile like me. Just for today, though, I walked in on my own power and was only infused with the steroid medication and not the controversial Tysabri (MS drug linked to fatal brain infections) or any other meds with heavy-duty side effects.

Not that Solumedrol doesn't have its own list of side effects but, as far as I know it hasn't killed anyone. For me, I sometimes get a headache, a metallic taste in my mouth, increased body temp, and a surge of energy. The drug literature includes a really scary list of additional side effects like hair and bone loss but so far, so good, for me. (Although hair loss wouldn't be awful if I could concentrate it on certain body areas.)

But I'm done and don't have to go back until after Christmas.


  1. I hope that the monthly pulses work for you. Enjoy your Christmas.

  2. I was given the high dose, 5 days solumedrol orally in November. No taper. First 4 days were a party of energy outpouring and jobs getting done. With one dose to go it all changed. Heart palpitations, intense respiratory distress, feeling bruised like I had been beaten (I cried putting on a bra because the straps hurt so much) plus a few others. I thought I WAS going to die. No monitoring, no guidelines of when to call a doc (Google gave me that at 11pm on the last night) and instead of the expected 3-6 months alleviation of symptoms it seems to have set in concrete the new symptoms I had before taking it. I don't know if I want to do it again, or at least not without monitoring. It's so hard to even see my neurologist, I don't think it would be on offer again in 2009 even if I did want it.