Tuesday, March 27, 2012

Benlysta: 2nd Infusion

Yay! It may be working!

The reason this post is coming a little late is that my 2nd Benlysta infusion was scheduled today instead of exactly two weeks from the first one, which would’ve been on Friday. Apparently they didn’t have any infusion chairs available on Friday, which isn’t greatly surprising because Rheumatology only has three such chairs for the entire department. Anyway, that’s why this is Benlysta Week 2.14, or something like that.

I’m not gonna lie…I am actually cautiously optimistic that the Benlysta has already started to take effect. I’ve been told by several people that I look or sound a little less like death warmed over (Ok, so they didn’t phrase it that way, but that was the general idea), and the level of constant pain is down a bit. Except, of course, where the surgeon has hacked into my wrist with a knife. But that’s a different story. Also, the stammer I'd developed out of some weird neurologic complication has gotten much better! Not bad for only two weeks on the drug!

My biggest complaint with the Benlysta infusions is still that they take a full three hours. I’m lucky in that I have a very accommodating boss, but three hours out of a work day for many people would be very difficult. And, unfortunately, there doesn’t seem to be any way to speed up the process. I’m also not a huge fan of the fact that they co-administer Benadryl, but I understand that it is necessary; it helps prevent an allergic response to the drug, but it totally spaces me out. I almost left today without my coat, cane...you get the idea.

One thing I’ve learned is that it is very easy to get chilled while being infused. The medicine is at room temperature, while my body is supposedly at, well, body temperature. So all the sudden I’ve got stuff in my veins that’s a whole lot colder than I am. So for those who, like me, have an internal thermostat that appears to be bipolar, I recommend wearing a warm sweater or asking for a blanket. It’s the most amazing thing: when you have an IV in your arm, people will give you anything you ask for!

In summary, I think it’s starting to help, and I’ve had no adverse effects except a slight headache. Well, that and the fact that I have to go home and sleep for at least six hours because of the *$%! Benadryl!


  1. Dad and I were both remarking that over the phone, you've sounded a lot stronger. I'm very delighted to hear that you feel it like we're hearing it. Go Sam!

    (And yeah, Dr. R's infusion room always had not only blankets but they were kept in a heater designed for them. They were wonderful!)

    1. Well, it's early on yet, but yes, I think I'm making real progress instead of free-falling for the first time in a very long time. The carpal tunnel surgeries aren't hurting either, as my right hand already hurts a lot less.

  2. Yay! I am so happy for you, that you are beginning to feel better. Except for that sleepy thing. I was delighted to receive your card, and hope to see monstrous fun soon. Go, go Sam!

  3. Some measure of success finally! I'm so pleased for you. I hope your body continues to respond positively to the treatment. Best wishes to you :)