Friday, July 29, 2016

No Infusion for Susan


Well, on the one hand you could say that my first Rituxan infusion was quite uneventful.  Unfortunately, it was uneventful because in the end there was no infusion.  When I got dropped off on Wednesday morning, I was ready to spend the afternoon hooked up to the IV stuff.  I had my technology, my books, my snacks and a bottle of lemonade neatly packed and ready to rumble.

When I got to the doctor’s office and checked in at the desk, I stopped to ask them about resuming my methotrexate.  I have not been taking it this summer since the pleurisy episode and could not remember how to ramp the dosage back up to what it needs to be. 

That comment started the conversation about how I was feeling and what my current pleurisy symptoms were.  There are some lingering issues such as occasional shortness of breath, trouble laying down flat, and rib cage pain spasms (ouch, these really hurt!)  To make a long story short, the doctors at the practice put their collective heads together and decided that I needed more time for my lungs to heal up before having an infusion of any type. The fear is that the infusion will set me back to square one with the pleurisy, which started with a three-day hospital stay. Yuck.

So, I called my husband and he came back to fetch me.  Right now I have an appointment for the infusion in two weeks, but I am not sure if it will actually happen.  I do appreciate the rheum doc team thinking things through and making a decision.  Guess we will have round two of that situation in about ten days from now. Fingers crossed that everything works out as it should.

In the meantime, it is prednisone and painkillers as needed to address this major flare I am living with during the dark days of no biologic medications in my system.  If I wasn’t a fan of biologics before, I certainly am a fan now.  The good thing is that my flare cycles and I seem to have a variety of days in sequence – a good day where I typically overdo things, a bad day after the good day when I pay for my overdoing and then an in-between day leading to the next good day. The days themselves also have a pattern – feeling pretty good in the morning and then sliding down that slippery slope until I am really hurting by evening time.  Does anyone else have days that act like this?

So, more adventures await! 

(Couldn’t resist the post title, too funny.)


Susan

2 comments:

  1. I have always loved your narrative style. Amazing how losing the biologics makes you appreciate how they manage the highs and lows. I have a suggestion based on the sequence. If you could control your natural urge to overdue on the good day you might not suffer as much the next day. You might be able to string together a couple of average days. Not sorry I don't have RA. My OA is bad enough. I am having a hip replacement this Summer just for fun!

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  2. The biologics are amazing therapeutic drugs, no doubt about it. Now, if they worked like their commercials do I would be really feeling great! You know me too well, Mary, it is almost impossible not to overdo on a good day. Of course, overdoing is not to the level it would have been a few years ago before the RA thing showed up. OA is no fun, either, although the two diseases/conditions are so different from one another. I hope your hip replacement goes well and that you have a speedy recovery.

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