The Steroid Experiment: Thoughts, Pros, Cons

I have an appointment with my Immunologist tomorrow. I am sharing the report I put together for her on my experience with Medrol (methylprednisolone). Here is the post I wrote on day 2 of steroids which explains the “why” of this experiment and another post written as I began to feel less side effects from them. I am day 18 of 25 and have one week left of a small dose every other day then I am free of steroids! Yay!  I found this dandy steroid converter should you ever find yourself needing to convert equivalent doses between various types of steroids. It is how I calculated 32mg of Medrol is the equivalent of 40mg of Prednisone.

Medrol Trial
32 mg to nothing over the course of 25 days

Dosing: 3 days each: 32, 24, 16, 8, then 4mg for 4 days followed by 4mg every other day

Positive Effects

  • temperature
    – temperature around was my normal (98.0) much more often
    – fevers didn’t get as high, last as long, or come as often
    – seemed to benefit all the way down to lowest dose
  • twitching/dropping things
    – improved during 24mg and up dosing
    – I didn’t twitch at all, I didn’t drop things
    – I regularly drop things and burn myself due to this issue
  • burning surges
    – decreased in frequency at 24mg and above
  • lymph node pain/swelling (armpits and throat)
    – helped all of the way to lowest dose with swelling
    – helped significantly with throat pain, throat tender as I got down to 4mg
    – helped at 32mg with armpit pain
  • sound sensitivity
    – normally, I live a life of silence because too much noise triggers my autonomic symptoms – I often use ear plugs
    – at 24mg and up, I listened to soft music for a few hours without any symptoms (big deal to me)
  • lacrimal gland/eye area pain
    – completely gone at 32mg but pain came back on 24mg and felt more painful than it was previously
    – bump under eye reduced in size
  • blood pressure
    – helpful for hypotension and orthostatic hypotension due to water retention effects, sometimes blood pressure was even borderline high
    – eliminated need for BP boosters at 8mg and up

Neutral Effects

  • heart rate
    – some days, it seemed the steroids lowered my resting heart rate while others it increased it
    – steroids did not effect postural heart rate jump or pre-syncope frequency

Negative Effects

  • fatigue
    – severely exasperated by steroids to the point of barely being able to meet my basic needs
    – improved as dose titrated and also as I began taking it at night
    – usually I suffer insomnia, but with taking steroids at bedtime, I fell right asleep
  • cognitive difficulties
    – have issues anyway, but much worse with steroids
    – couldn’t think clearly, had issues relaying stories/information/making conversation, forgetful
  • muscle aches
    – aside from back pain (neither better nor worse), worse on the “bad” days
    – rather than feeling achy, they felt similar to how they do after an intense workout
  • joint pain
    – knees and ankle pain worse on “bad” days than usual
  • dizziness
    – more mild than the dizziness I get due to POTS and different
    – occurred intermittently throughout experiment despite normal BP/HR, but especially at 4mg and as I decreased dosage

I kept a fever diary for the doctor. She wanted me to record activities I do prior to a fever as well as my heart rate. Being the Type A I am, I went a little beyond that. Maybe my method will be helpful for someone else. I color coded my chart. I assigned any temperature 98.3 the color green since, for me, this is my perfect temperature. Temperatures between 98.3 and 99.5 got no color. I assigned temperatures 99.5-99.8 as yellow and 99.9 and above as red. As I go through the days of steroids beginning to end, there are far fewer red boxes and significantly more green boxes. I’m happy the temperature/heart rate tracking is over. I think measuring stats so frequently is not good for mental health! I only measure them if I need to know in order to dose my medications.

fever diary

In a nutshell, steroids were helpful for many symptoms and at high doses, helped several neurological symptoms. I don’t think the side effects of fatigue and cognitive difficulties were offset by the relief of some symptoms. My goal is to gain some quality of life and, despite relieving many symptoms, steroids made my life less normal, not more. I’m not trying any new medications until after next Tuesday when I try on wedding dresses!

4 thoughts on “The Steroid Experiment: Thoughts, Pros, Cons

Add yours

    1. The doctor patiently kept trying to understand if I felt the steroids were helpful and I couldn’t quite find the words. I explained I don’t want to allow an autoimmune disease to damage my body, especially since my biopsy showed scarring, but I also want a life. Finally, when I explained it was nice to feel less pain and based on the reduction of neurological symptoms, the steroids were helpful, but my main goal is to have an improved quality of life which the steroids impeded….. we seemed to understand one another. Of all of the doctors I have encountered, I think I trust her most.


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