My name is Janet and I am 67 years old. I have until recently been very fit and active, going to the gym to do various classes such as yoga and dance fit and am of average weight.
Way back 3 months ago i began to experience buttock and hip pain which initially was thought to be due to my known prolapsed disc at L4-5 .
The pain worsened and crept up to my shoulders and down my upper arms at which point my GP did a blood profile which demonstrated a high CRP at 45 and a raised White cell count.
The diagnosis of PMR was concluded and I was started on 15mgs of pred.
Initially my response was good but had to increase to 20mgs to control the pain.
I am now on day 64 of Pred and attempts to wean down have proved difficult.
Whilst my hip , buttock and behind the knee pain has gone my shoulders are still very painful.
I am currently still on 15mgs and have never gone below 13mgs.
Am I expecting too much to be completely pain free ?
I take my pred in the morning and have fairly pain free days but by the evening the pain returns and I take codeine and paracetamol to help with sleep.
I know it is recommended to take pred in the morning but wondered if I could take a dose in the morning , say 12.5 mgs and take the other 2.5 mgs in the evening.
Also has anyone out there any experience with taking Cannabis oil as a supplement to treatment.
My diet is healthy and contains all the recommended foods and i take a curcumin tablet every day.
My recent bloods were all good and my CRP is now 8
Written by
larkthebark
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The only way you will know is by experimenting with the split dose. I haven’t read any really positive results about Cannabis Oil for our condition unfortunately. Make sure you aren’t trying to live a normal life. Although Pred is going someway to controlling the inflammation, you remain ill and must act accordingly, plenty of rest and pace your activities. Our muscles simply can’t cope with too much and take a long time to recover from physically demanding tasks. The energy we feel is, to quote a famous politician, a hoax.
To be at 13mg after barely 2 months is actually not bad - or it wouldn't be if you felt better! You should have stayed at whatever your starting dose was for a month until symptoms were at a minimum before starting to reduce - and to have gone from 20mg to 13mg in 8 weeks is far too fast. No reduction should have been more than 2.5mg down to 15mg so far and only every 3-4 weeks. And you must have done more than that.
This article from an expert team and aimed at GPs to help them manage PMR better gives a much better tapering approach:
though even it may be too fast for many and they don't emphasise the fact the taper must be adapted for the individual patient as we are all different.
As SJ asks - did you try to go back to normal activities once the 20mg kicked in? You can't - the pred has cured nothing, it is just mopping up the inflammation and so relieving the symptoms, but the actual underlying autoimmune disorder is still chugging along in the background, attacking your body, making you feel as if you have flu and leaving your muscles intolerant of acute activity. You have to contribute to the management of your illness by resting and pacing:
So yes, you may be expecting too much to be totally pain free but I think you might also benefit from splitting the dose. How you split will depend on you, everyone is different. The usual suggestion is 2/3 in the morning and the rest at some point later in the day to extend the antiinflammatory effect. Exactly when is difficult to say but a couple of hours before you expect the pain to return to allow it time to work is a place to start. That MAY interfere with your sleep but you have to try to find out.
Thankyou responses are very helpful. to answer your question I have definitely not tried to return to my normal self . The house is filthy and I have hired a gardener !
I walk 2 miles a day with the dogs in the morning with my husband holding the leads as all my residual pain is in my shoulders and upper arms.
I wake very early due to mostly pain and perhaps the effects of pred so go back to bed for a siesta.
I have a great diet and my weight is steady.
Will try splitting the dose and as you say we are all individuals and its a juggling act to get it right.
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