I was diagnosed with PMR about a year ago, although my markers were normal, seen a Rheumatologist and my two GPs decided it wasn’t PMR, I was on about 10 mg of prednisolone at the time.
I still had severe back and leg pain, was put on every painkiller imaginable, even Opium patches, where I was seeing monkeys??
Eventually I had a MRI scan, seen a Neurosurgeon, who explained I had spinal stenosis, and three herniated disc’s. I was happy to have found a solution, and although it’s operable, we decided to try Physio and a nerve painkiller, which is helping a bit, but need to up the dose a bit.
So, I was still on steroids, around 7mg, and was told to reduce gradually to zero, as I didn’t have PMR. Reduced to 5/4, all good, then at 3.5, I had shoulder, and left sided neck pain, I’m back up to 6mg. I still have pain when I wake, but about an hour after I take my pred, it’s gone.
Should I stay at this, or up to 7 mg I have been on 6 for over a week.
Happy for any advice
Anne
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Carathedog
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If it was me, I would negotiate with my doctors to return to the last steroid dose I was comfortable at. This has to be better than the monkeys - poor you. Also it is perfectly possible to be blighted with more than one painful, chronic condition. Maybe PMR is there in the picture too. Wishing you relief from the suffering Carathedog. 🌈
If the pain is gone after an hour on 6mg I wouldn't feel a need to go up to 7mg really unless that morning pain gets worse over time. It is quite usual to heave some pain in the morning. The inflammatory substances are released in the body about 4am and start to create inflammation - the sooner after that you take the pred, the less work it has to do and the sooner the pain goes, The ideal time to take plain white pred is 2am and then it is in the system before the inflammation starts - and it never gets hold.
If it is what you need to stop it getting worse - that is different. If you stay about the same, it's a question of shuffling things around. Hopefully that will work.
Thanks for your comments, some fairly similar situations, I’m not sure if my pain is PMR or discs, I’m sure both, and feel I’m in the same boat an unfortunate set of circumstances. Thankfully my preds are only 6mg.
hi Carathedog. I’m certainly no expert on here, but if the pain subsides an hour after taking the Pred then I’d stay on that for the time being. Obviously if the pain worsened then you might need to take advice from your GP/or Rheumy.(I’m always very reluctant to increase my dose unless I’m desperate).
Hopefully the monkeys have gone off & found another tree to sit in🤣. All the best to you.
hi there. You poor thing. It actually sounds just like PMR to me. I’ve been on Pred for nearly 5 years. I started on 25mgs a day. After a few months began tapering, and was doing well until I got to 3mgs. The neck and shoulder pain was dreadful. Anyway, my Consultant is a lovely man, who put me back up to 10, then I’ve tapered down to 5. He says I might be someone who just can’t get below this. My GP has said the same. So that is how it is for me. Occasionally I have a flare and take 10mgs. for a few days, as advised by consultant and GP. I do hope you find a solution to control your pain and a decision over exactly what you are suffering with. Xx
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