An Infusion for Susan

Well, my first Rituxan infusion went off without a “hitch in it’s giddy up”. After having the infusion postponed for two weeks, I was worried it might get deferred again yesterday. However, that was not the case. After four hours hooked up to the IV, I was ready to get up and move around. Once again, I had my technology, my books, my snacks and a bottle of water neatly packed and ready to rumble. This time everything came in handy to pass the time.

The nurse started out the IV drip really slow, and treated me with all of the additional reaction drugs I was expecting – Ibuprofen, Methylprednisolone and Benadryl. After about an hour, she turned up the drip a bit as everything was going very well and I was not reacting to the Rituxan in any way that I could tell. The only eventual reaction that I had was to the Benadryl.  It made me fall asleep for about an hour or so.  Sure hope I didn’t snore!

I slept away my afternoon and stayed up too late yesterday evening as a result.  The good news is that today I really feel good.  The inflammation and pain has subsided and I can move around much more freely.  The shortness of breath and rib pain from the pleurisy is still here, though.  Let’s hope that continues to fade away over time. My second infusion is two weeks out on a Thursday and then I won’t have another for about 6 months.  Now that is an infusion schedule I can live with.

Hoping tomorrow is another good day (and I think it will be!)

Susan, the RA Science Experiment

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

Need More Sleep

Sure would be nice to sleep a full night’s sleep again.  I have been battling respiratory problems for four weeks now, and a good night of sleep is proving to be elusive if not impossible. Falling asleep at bedtime is not the problem. Staying asleep in the wee hours of the morning does not work for me.  I am able to sleep for 4 to 6 hours and then I wake up unable to breathe comfortably.   Talk about a hard “wake up call”, this would be the one.  Nothing like shortness of breath and rib pain to get you up and alert, whether you want to be or not. Add in the pain from an RA flare and you are ready to rock and roll, so to speak.

Yesterday was a high pollen day here in Colorado, and it definitely irritated my lungs throughout the day. The smoke from the many Western wildfires earlier in the month also got my undivided attention.  Guess I am one of those people they are warning when the TV or radio announcer says that the air is bad on a particular day and for people with respiratory problems to stay indoors or at least take it easy.  Wonderful.

I have been doing a lot of research on RA and sleep issues.  I have also been trying to find a way to overcome my inability to sleep at night, but to no avail. All of the recommendations for getting a good night of sleep tend to focus on falling asleep versus staying asleep until a reasonable hour. The meds I am taking may also be to blame, particularly the prednisone and the albuterol for dilating my lungs as needed.

One additional impact of my strange sleep schedule is that I am waking up my husband at these odd hours, too.  Even though he is able to go back to sleep, I know that my issues have an impact on his sleep, too. In the early days of this pleurisy thing when I was very ill, I would stay in bed and try to sit up and read or do a puzzle.  Bad idea when you are sharing your bed with another person as you are disturbing them.  Now I get up and leave the room versus trying to stay put.

This strange sleep schedule requires me to nap in the early afternoons just to get through the day.  I am certain that the nap is not the best idea, but it is the highest quality sleep I am getting right now. Not sure why it is easier to sleep a few hours in the daylight, but there you have it.

The good news is that I have gotten a lot of work done on my book revision in the wee hours of the morning, sitting here working in the kitchen with a cup of coffee. The cat likes me better, too, since he can come down for a snack in the wee hours of the morning and then head back to bed. The collie thinks I am great as he heads outside when it gets light and enjoys the cool summer morning.  Pet brownie points are pretty much my only reward.

I have also learned that the hummingbirds start feeding about an hour before the sun rises. Still hoping to see some interesting nocturnal wildlife (foxes, raccoons, porcupines, bears, bobcats), but so far no interesting animals have appeared around the house for my viewing enjoyment.

Any suggestions for extending a short night of sleep into something a bit more normal?  I would welcome them.

Here’s hoping for another good day!
Susan

Complications, Complications, Complications

Until recently, I felt as though we had my RA under control with Remicade infusions and Methotrexate pills. As a novice science experiment, I did not realize just how tricky the disease could be and the many ways it could come after me.

After my most recent infusion, I developed a case of shingles, ouch. Now that hurt! I guess the shingles indicated a weakened immune system, and a week later a nasty respiratory virus stepped in to grab me. Two weeks and now I had two illnesses I had missed out on before: pleurisy and the shingles. This is the first time I have been seriously ill as a science experiment, and the doctors think the Remicade and the RA were key contributing factors.

I never realized just how nice it is to be able to breathe freely and without pain. After three days in the hospital, I came back home to ride out the respiratory issues. It is going to be a longer ride than I thought.  The other outcomes from these illnesses is no more Remicade for me. I am being switched to Rituxan after the respiratory issues clear out. Scary, scary, I have watched the folks getting their Rituxan infusions and it seems more daunting then two hours of a Remicade drip.  The side effects seem more staggering as well.

Of course, this means that I will be in a painful state for the next 4 to 6 weeks, taking only Prednisone while the Remicade leaves my system.  Having RA flares along with not being able to breathe truly adds insult to injury.

Here’s hoping tomorrow is another good day!
Susan
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