After a restful Thanksgiving weekend, I wanted to discuss something with you. Steroid Tapers.
As you know, I have had a recent MS relapse. This one wasn’t one which I just wanted to "wait it out" for. I’ve done that with very minor bumps/relapses along the road during the recent years. In fact since switching drug treatment two years ago, my MS relapses had been more subtle and my MS has been more stable.
So until the last couple of weeks, I had not had a real-life, steroids-requiring MS relapse which sent me to the doctor’s office in search of treatment in a long while. This time around I knew that I would be asking for Solumedrol but it was just a matter of timing. I had concert commitments over the weekend and the Thanksgiving holiday was coming up.
MS was affecting my leg strength and causing foot drop (which is new to me) in my right foot, the same one which had been showing a bit of clonus during yoga sessions. My walking was becoming impaired and I was experiencing spasticity again in both legs. Ouch. The fatigue was back with a vengeance also.
So I needed to do something and that started by me calling the doctor’s office on Friday (the week before Thanksgiving) for a consultation. I started IV Solumedrol that afternoon and used oral steroids to carry me over the weekend. Monday morning I was back in the office for three more days of IVSM.
After this round of steroids (four days IV total and two days already high-dose orals), I needed to make a decision. Whenever you have MS, it seems that there are always decisions to be made. This one - to use an oral steroid taper or not.
The general consensus is that if a patient receives five days of IVSM, then an oral taper is highly recommended. The drop-off of steroids is drastic after you’ve just had the equivalency of 5000mg of prednisone pumped into your body, then nothing. But when a patient takes only three days of IVSM, then the taper may be skipped if desired by patient and doctor.
Thursday morning, Thanksgiving morning, I slept in a little later than anticipated. After getting up early the previous three mornings to go to the neurology clinic for steroid infusions, I was glad to not have to set the alarm. I knew I would be awake early enough anyways because of the steroids, so it seemed important to me to start off the day taking care of myself and to let my body do what it needed to naturally. No alarm clock.
I also needed to decide whether to take some Decadron or not (Decadron is my oral steroid of choice as prednisone and I don’t get along too well). I was right in between the two scenarios of whether to taper or not, but actually having had six days of steroids already (with the oral float over the weekend). I was debating with myself.
Come Thanksgiving morning after sleeping in a little bit and getting up to check email, I noted that my hands were shaking. My arms were exhibiting minor tremors and I was already deciding that maybe I shouldn’t be handling any knives in the kitchen that day.
My body was screaming out - Whoa baby, did we just hit a wall this morning? Where’s those steroids?
It was these shakes which quickly convinced me that my body needed the taper. I didn’t feel achy or muscle crampy… yet… but that would come later. So I took two pills as instructed and followed up with two more in the evening. Every two days, I stepped down another pill until today I am only taking two pills total. Tomorrow it will be only one.
Besides the extreme EXTREME fluid retention and moodiness, this round of steroids has been uneventful. It worked very quickly for which I am thankful. I’ve been down this road several times before and know that it takes about three full weeks before I will begin to feel totally myself. Not weak and wiped out from the steroids.
It has been only one and a half weeks though. I am anxious to feel "normal" again and be strong. But it will take time to recuperate. Yesterday was a glorious day outside and I wanted so much to be able to help do some fall yard clean up. I was able to collect fallen twigs and branches so that someone else could mow. That took me forever as I rested so much more than I worked during one single hour.
So I guess in re-reading this post, I’m not really talking so much about steroid tapers. I’m just thinking about taking care of myself. Listening to my body and giving it what it needs at the right time. Needless to say, I did NOT go out shopping over the weekend to buy lots of stuff on sale. I rested and slept…a lot!
What did you do over the weekend? Have any good stories to tell?
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.