Day 4

Yesterday I was very foggy by the early afternoon and my cognitive processing speed was ridiculously slow.  I increased my steroids to 30 mg.

My ankles were a little sore and by midnight I was hobbling a bit.  We had decided to go to a friends for a couple hours for game night.  I had two or three drinks.  I am not sure if this affected me or not.  I also had pork for dinner with spinach, but then had a couple of hot wings at our friend's.  Not sure if the hot sauce can cause inflammation.

At about 4AM this morning, I awoke with extreme pain my knees and ankles to the point that I was crying and whimpering.  I put my head pad on it immediately and after about three minutes of the pain worsening, I took a pain killer that was leftover from a previous prescription.  After about 10 minutes, the pain began to subside and I fell back asleep.

At 6:30, I awoke again with the same pain, but had no more pain killers.  I took four Advil and 20 mg of steroids with the plan to take 20 mg in the evening for a total of 40mg for the day.  Tim drew me a hot bath so that my joints could get relief by floating a bit.  It took about 20 minutes or so and everything calmed down a bit.  I called my rheumatologist's office and the doctor on call told me to take 60mg and that he would call me in a pain killer.

The relief from the Advil lasted only about 30 minutes.  By 8AM, I was in screaming pain again, even in the tub.  I called back my doctor and he said he recommended that I go to an Urgent Care.

By 9AM, we were at the Urgent Care.  Throughout that time, it was the most pain I have ever been in my life.  When I first had lupus before I was diagnosed and treated, it would hurt to walk and put weight on my knees and ankles or if they were touched.  In this case, nothing was even touching them and it felt like that pain times 10.

After we checked in and got me settled to see the doctor, the pain subsided a bit.  After an hour, the pain was nearly gone.  This was before I even got any pain killers to kill the pain.  I think the steroids kicked in at this point.

The doctor had them give me MORE steroids in the form of the shot.  Boy am I going to be cranky today. Poor Timothy.  He also prescribed me Tramadol to take when the pain comes back.  I have not taken any yet because I am feeling pretty good.

I felt silly after my pain went away due to the steroids, but I honestly felt like something more was wrong than just joint pain because of the severity of the debilitating pain.  I thought maybe it was something more serious like a blood clot, so I am very very glad that we went to the Urgent Care anyway.  It was too much pain to have to just sit there and wait for the pharmacy to open at 10AM for the pain killers, especially if something more could have been wrong.

I plan to talk to my rheumy tomorrow to explain what happened and discuss my future Benlysta infusions.  The doctor on call said that that kind of pain is not typical, but that some joint pain is.  We will have to see what my rheumy says.