Secondary Impacts

Usually, RA is our biggest health issue but not always. In my case I have three of these autoimmune conditions and it seems what might be good for one is just awful for another.  Such is the case with the biologic medication I use.  The medication must be delivered via two infusions delivered two weeks apart up to 3 times per year, or if things are well under control, they can be delivered twice per year.  I have used this medication for four years, despite what you may think, based on my description below, I am a big fan of the medication. The reason I am a big fan is that it works very well for me.  Before it can work, I first must endure two to three days of discomfort with each dose.  This is the description of day one or dose day at my house.

Day of Infusion

I usually find myself waddling into the infusion center.  I always welcome the infusion, because I know that relief of stiffness and pain is close at hand.  The infusion lasts between four and six hours, so I always prepare music.  I am a fan of classic rock; my telephone is juiced up with the hits of yesteryear and I have my wireless headphones charged.  I always wonder how many songs I will hear today.  My record (it was a long day) has been 54.  I usually listen to 40 – 50.  The truth is I will only hear about 6-7 songs.  The rest I will be completely asleep.

Most people can tolerate this medication well, but like all other infusions I have received, unless I have intervention with a variety of medications I start dry heaving within the first 30 minutes of administration.  To avoid this awful reaction my doctor has worked out a plan that provides a mixture of oral and additional infused medications that help me sleep.  We learned long ago that if I sleep, my infusion experience will be more tolerable for both the staff and other patients but mostly me.

Assuming the cocktail works, (sometimes it does not) I will blissfully be sleeping at least four and sometimes five hours.  The music playing in my headphones rolls on with songs by Pink Floyd, Chicago, Neil Young, Tom Petty and a host of others while I am oblivious to the world.  When I wake up,  I love looking back to see what I heard.  Sometimes I store it as my new eclectic mix for the month.

Post infusion

After the infusion, I wobble again out to the car where thankfully I do not have to drive.  It is always nice to wake up and see Sheryl because I know she will help me get to the car and home.  As I start to regain my awareness, usually my joints are screaming with pain and stiffness.  Whether true or not I imagine my joints being assaulted by the advanced units of the biologic medicine brigade.  These advanced elements roam my body looking for a fight.  One is always nearby so the attack begins and my autoimmune system resists.  The war inside my joints is on.

For safety, the infusion cocktail includes Solumedrol a Glucocorticoid that sends my blood sugar as high as 500 mg/dL in the first 36 hours.  Normal blood sugar is between 80 and 140 mg/dL; I like to keep mine around 120 mg/dL.  The Solumedrol is a normal part of this infusion for this medication, but as a person with diabetes, my blood sugar elevates to dangerous levels.

This battle over blood sugar is waged without my regular insulin pump.  Since I use a modern pump with built-in artificial intelligence, its programming learns and applies what it learns to dose in the next seven-day cycle.  Applying the information learned during the period immediately after a sustained high blood sauger would be dangerous when my blood sugar returns to normal levels and patterns.  At the start of the 36-hour period, I use about 3x the amount of normal insulin of a normal week.  To treat this high blood sugar issue, I must disconnect the new pump I use every day and use my old pump.  The older manual pump requires more mental work than usual and unfortunately, this increased mental work comes exactly when I want to sleep off the medications used during the infusion.

During the first 36 hours, I will inject about 2.5 times the usual amount of insulin and use the pump to force my blood sugar to normal ranges.  Failure to get control of the blood sugar can lead to a dangerous condition called Diabetic Ketoacidosis (DKA).  DKA can be fatal and often leads to hospitalization.  The way to prevent this DKA is to use more insulin.  On the reverse side using too much insulin can lead to the condition termed hypoglycemia (low blood sugar).  Hypoglycemia can also be a deadly condition, so I must walk a fine line applying increasing amounts of insulin while being vigilant to hypoglycemia.

Usually, after the first 24 hours, I have my blood sugar harnessed around the 200 level and that means I start to feel better.  My joints are still screaming but thankfully I have regained some control over the one thing I can do something about.  By the end of the first 48 hours, I can get my blood sugar down to a level where I manually adjust to take care of highs.  And at the 36-hour point, I can usually switch back to my regular insulin pump and proceed as normal.  If it is the first infusion of the pair, I get ready for round 2 in 11 days.

Which is worse?

When two chronic conditions intertwine it is often a choice of what to treat and what to let go.  In my case, the decision to battle high blood sugar is worth the fight.  When people ask me, which is worse diabetes or RA, I always say RA.  With diabetes, I have insulin to drive down blood sugar, the road to feeling better rests entirely in my hands.  I make treatment decisions and adjustments every day, so I have lots of practice.  With RA, individual treatment decisions are mostly out of my control.  Yes, I am consulted but I do not get to dictate the decision with almost immediate results. There is something just agonizing about calling the rheumatologist to report you feel bad, as compared to telling the endocrinologist your blood sugar is 275 and I need help.  I like numbers and so do doctors.