I was diagnosed with PMR in June this year and put on 15mg Prednisolone. Last week this was reduced to 12.5. On both doses, I was experiencing pain by the evening and this week decided to take the little 2.5 tablet at mid-day to try and prolong the pain-free period until bed-time. I now wonder whether I’ve done the right thing.
I take the 10mg as soon as I wake up (about 5am usually) to try and deaden the pain, so that I can function in the mornings. I do feel pretty awful until lunchtime.
I seem to be between a rock and a hard place. Either give up on functioning in the morning or don’t sleep at night.
I would be grateful if anyone on this excellent forum has any thoughts on my dilemma.
Written by
Notimeforpain
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It sounds to me as if they haven't left you on the starting dose long enough to clear out the inflammation so there is no margin to allow you to reduce the dose. If you still have that much pain - you shouldn't really have been told to reduce the dose.
However - when are you having night time pain? When are you nearest to pain-free? Where is your pain at night?
Thanks for your response. Before I took the 2.5mg at lunchtime, I was in pain in my upper arms (mainly right arm) and behind my right knee at about 7pm. I am now nearest to pain-free at about 2pm which continues until I’m in bed (11pm ish). Pain and stiffness is back to greet me when I wake up and I take the 10mg however early that might be.
You are not well controlled - you need to discuss this seriously with your doctor, whether it is a GP or a rheumatologist. Too many doctors just don't appreciate it must be well controlled right at the start,
Just to say I was prescribed 20mgs initially which worked well and did not reduce for some weeks to 17.5mgs. 20 is unusual it seems , most seem to be started on 15 but do not worry if you have to up a bit to clear the inflammation. Most important, don't reduce too quickly or by too much. Was it your GP who diagnosed? They need educating about this illness, plenty on here to help in terms of people, access to research papers etc.. I'm printing them out just in case I come across any problems with my GP (so far ok as eye hospital in charge of prescribing) but be strong and please don't continue to suffer unnecessarily. Best wishes and update us.
Hi, like already mentioned it sounds as if your initial dose was not enough and/or maintained for long enough to clear the initial inflammation build up. Think you need to speak to your doctor and review the dose and tapering plan. You might need to go up to 20mg for a few weeks and then only taper down when things are under control. I think the general starting recommendations are between 12.5mg and 25.0mg so you would still be well within them. There are a number of tapering plans in the FAQ'S. The other thought is, if you are awake then take your Pred around 02:00ish with some yogurt, the nasties (Il6's) that cause the inflammation come out to play at around 04:00ish and if the Pred is already in your system it should give a far better morning. It's worked well for me and many others on the forum.Have you also made the neccessary changes to lifestyle that are needed with this ailment?
Splitting was a miracle for me as I too suffered in the morning hours
As soon as I split the dose (half morning and half evening) I was reborn and pain free all day and night
I continue to split to this day - now at 8.5 mg/day after close to 6 years of PMR
The reasons I am still so high are due to stress (wife has dementia but now in LTC so I will be less stressed) and Leflunomide which set me back 2 years.
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