The Surprise Decision

Back in August my doctor had to cancel my appt last minute and left me in the hands of another doctor, “the substitute”. I was scheduled to see that same substitute on Wednesday, since my doctor was out of town. I thought it would be better since I knew in advance this time that I was seeing a different hematologist at the center, but it was still a little strange. It wasn’t nearly as awkward as when I was blindsided, but it’s hard putting your trust in someone who doesn’t know your case in it’s entirety. Knowing he is a hematologist and he works at the same center is definitely reassuring, but treatment decisions can vary slightly from physician to physician and it’s hard to put your faith in someone new.

For instance, my hematologist had said that if my platelets were still good on Wednesday he would switch the prednisone to Tues/Thurs instead of Mon/Wed/Fri. My platelets dropped from 106 to 98, so I expected the doctor to veto the prednisone taper, but the substitute said the slight change was just a meaningless fluctuation. Consequently, he not only approved the change in dose, he told me I should stop the prednisone completely, rather than switch to twice a week. I was (and still am) a little nervous about taking the substitute’s advice over my own doctor’s, but I have to remember that they simply each have their own preferred rate of taper. This doctor seemed to think that I was being weaned off the steroids at a painfully slow rate and there really is no difference in the body’s reaction to two days a week versus three.

I’m choosing to follow his instructions and end the prednisone, at least until I see my doctor on Wednesday the 18th. Fingers crossed that I don’t regret that decision!

In short:
As of Wednesday, January 4, 2017 I have been officially taken off of Prednisone, thus ending my 221-day steroid experience.

During those 221 days, the prednisone has caused some strange and frustrating side effects. The steroids have made me cry and panic and, at times, feel completely crazy and paranoid. They have changed my physical appearance and have dramatically thinned my hair (to the point where I had to cut most of it off so it looked like it had volume). Prednisone can really mess with your mind. Over the past seven months, every symptom has felt like a side effect and every side effect has felt like a symptom. I haven’t been able to determine what is a cause for concern and what is simply to be expected on high-dose steroids. I can’t count the number of days I had muscle soreness, heart palpitations, and hot flashes. I literally could not be happier to be done with the steroids. Here’s to hoping my numbers hold and my hematologist allows me to stay off of them for good! I have NO intent to start them again – EVER.

Good riddance!