PMR first flare up - how high should I go back to?
Posted , 5 users are following.
Hi everyone,
I'm a 55 year old man - usually very active. I've had PMR about a year (starting on 20mg) and was tapering Pred reasonably successfully - up until recently...
Was OK on 5mg Pred, and did a slow'ish taper over 65 days to 4.5mg without any major issue but then due to a mix up at my GP, was repeatedly refused the prescription for my 2.5mg tablets. With only a limited supply of the 2.5mg left (I was taking 1x2.5mg + 2x1mg) I decided (perhaps foolishly) to continue tapering straight down to 4mg, which seems to have led to a pretty bad flare-up/steroid withdrawal.
I appear to have set myself back to where I started a year ago - i.e., PMR so bad I'm unable to bend down to put on my socks & considerable joint and sharp abdominal pain to the point that it's waking me up at night.
I went back up to 5mg just a couple of days ago but I am still really struggling with the pain & lack of movement.
Could anyone recommend what level Pred I should go back to and for how long? Or should I just try & ride it out at 5mg for a few weeks in the hope my body will adapt?
Having put in so much hard work to get down below 5mg, I'm a bit reluctant to go too high but any advice would be gratefully accepted (my GP is pretty useless at the moment and it's almost impossible to get even a phone appointment...)
Thanks,
Alan
0 likes, 5 replies
EileenH alan0104
Edited
You could try adding 5mg to the dose where you flared for up to 7 - 10 days before dropping back to the dose at which you were OK previously - that is a recommended approach. You need to clear out the accumulated inflammation that has built up enough to cause symptoms. Try that and see how you get on.
alan0104 EileenH
Posted
Thank you so much. I'll give it a try. Pain in my hip was excruciating last night so I went straight back to 10mg this morning. Hopefully it will clear the inflammation & I can bounce back down in a week or so.
Anhaga alan0104
Edited
Before my PMR diagnosis about 5.5 years ago I had such bad hip pain I thought I should get myself lined up for a hip replacement. At that time however x-rays showed no sign of osteoarthritis in my hips (about the only place I don't have it). Pred cleared that pain up along with all the other aches and pains, but as I tapered the hip pain began to come back. I was going to a physiotherapist for something else at the time and she mentioned my back muscles were "like bricks". It appears that these muscles were in a more or less permanent spasm and this was affecting an awful lot of other things. Dealing with the back muscles had the interesting and long-lasting (to this day) side effect of also eliminating my hip pain.
EileenH Anhaga
Edited
I'm having another set of physio - working on tight muscles but mainly buttock and outside of thigh so far and the difference in the low back pain after just 2 sessions is noticeable. Today she had a go at my insteps - the reflex point. My left foot was positively glowing with warmth - never experienced that before!
EileenH alan0104
Edited
If it doesn't do get an x-ray at the least - it may be something else.