Update - prednisone taper and Covid Booster

[LucilleG]

In the past few weeks, while finishing my DSNS taper from 5 to 4.5 mg, I've noticed some of the original PMR symptoms I had - painful neck and a pulsing in my head to the beat of my heart. When I went to a GP within a week of getting these symptoms back in January 2021, they ruled out having a tumour and other such things and said to go to a massage therapist. Things got progressively worse, but the pulsatile tinnitus (I ask the GP at that first appointment if I had that and he said no) sort of went away, or at least didn't sound like someone was hammering outside of my house.

This past Tuesday, I went up to 4.75 mg and things settled down. However, I also had my 6th Covid Booster that day. I continued taking 4.75 mg and realized that I still would notice my neck bothering me, or would hear my heartbeat in my head. I decided to take 10 mg this morning.

How long do you think I need to stay at 10 mg? I am booking an appointment with a GP to ask about the pulsatile tinnitus, but hopefully it will go away. (I could try to talk to my rheumy, but I really don't want to...they'll be annoyed that I'm not down lower and will think I'm a wimp for not toughing it out!) I think I will then need to stay at 5 mg and stay there for at least a month, maybe longer.

[PMRpro Ambassador]

You cannot tough it out if the dose of pred is now too low for the disease activity. You are NOT reducing the dose relentlessly to zero come what may - you are looking for the lowest dose of pred that gives the same symptom relief as the starting dose did, The pred cured nothing, it is a management strategy to manage the inflammation and allow a decent quality of life until the underlying autoimmune disorder that causes the inflammation burns out and goes into remission. You have identified that dose - probably 5mg, less leaves some inflammation not mopped up and that is leading to mild symptoms. Tough it out and they will get worse as the inflammation builds up and eventually you could end up back at the start again.

This recent publication deals with the concept of Treat-to-target in PMR and GCA:

ard.bmj.com/content/early/2...

For now, 10mg should deal with that overshoot in a week. possibly less, and then you can drop to 5mg and stick there for a few months to be sure it is really enough. Then you could again try a 1/2mg drop and see if it works - sometimes it does but may take a few tries to succeed.

[LucilleG in reply to PMRpro]

Thank you for this! Yes, I would not "tough it out", as per my rheumy's instructions. It's like they don't understand about the inflammation and how it can build up if on too low a dose!