Just less than a month ago, I reduced my first prednisolone dose from 15mg to 12.5mg. This was after a blood test. I wasn’t keen to reduce by more than ten percent, especially as I was going to be travelling a long way and be away for Xmas and new year, then home for two days and away again for eight days. I emailed the surgery about this, but they just said that they wanted me ro reduce my steroids. I dutifully did, but three days later I started feeling symptoms like pain in arms/ shoulders and very very tired. Paracetamol helped, so I figured it was steroid withdrawal. It has never felt like a flare, as the symptoms were nothing like what I was having before steroids when I could hardly walk up stairs or lift my arms because of the pain/stiffness.
After three or four days of not doing as much, things improved, but I did not return to anywhere near the levels of activity I was able to do on 15mg. I tried changing the time of the preds and tried all times between 1am and 7am, changing gradually each day.
The mild shoulder/arm pain is there each day and makes things like Chair yoga and seated qi gong restricting. My legs get tired every day and I have had some days of them feeling wobbly, even though they aren’t. And sometimes the fatigue is pretty awful. I had a period of about four days when my legs felt so wobbly and tired that I could only do a normally five minute walk in fifteen minutes with two or three rest stops. I’m now walking about thirty minutes flat walk with two rest stops. Doing very little else other than standing in kitchen for a short a time as possible and seated qi gong /chair yoga.
I wish I had trusted my own instincts and left the reduction till I was back home and then gone down to 13.5 mg using Dorest Lady’s tapering method.
So my questions; am I on the wrong dose, as I feel I am? Should I increase ro 13.5 mg for a week or two and see what happens? I’m having a phone consultation with my gp on Friday , so could leave it till then, but although she is (unusually) empathetic, I fear she will just tow the standard NHS line on dosage reduction.
thanks
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Freshairfiend
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It probably would be sensible to go up to 13.5mg, but best to wait until you speak to GP and suggest that. Plus state the reasons why and maybe hint [subtly of course] that had you stayed at 15mg before you went away might have been sensible.
However, would just to say because you felt good at 15mg did you automatically assume you would feel the same at 12.5mg and were slightly too ambitious in what you did at that dose.
The initial dose [whatever that might be] is usually higher than you need on a daily basis because it has to do two things -
a. To mop up built up inflammation, and
b. To deal with daily shedding of cytokines,
so it can give a sense of false energy, and although each subsequent taper should give you the same relief as the initial dose, you may not have the same energy level.. so overdo things, and your PMR may well complain.
the gp agreed with me. Her suggestion was to increase to 13.5 for 2-3 days and if that wasn’t helpful to go back up to 15 and reduce monthly by 1mg. I don’t feel 2-3 days is long enough. I’ve been on 13.5 for two days now and although my walking has improved a lot and my shoulders are better in the morning, I want to give it longer. I also have a bad headache today. My instinct is to give it four days and if not happy, to increase to 14mg but possibly alternate days with 13.5 mg dose, depending on how I feel. Do you have any thoughts?
Agree 2-3 days is probably not long enough to notice a significant difference. But to be honest I agree with GP - go back to 15mg and make sure you have it fully under control.
Faffing about with the odd 1/2mg is neither here nor there - so bite the bullet and step back up to 15mg - then monthy 1mg reductions as GP suggests.
That’s great, so clear. I think it’s the psychological effect of ‘going back’ to where I started from that feels so deflating and therefore lacking perspective.
There is no standard line - and reducing too soon just results in needing more pred. I would agree you are on an inadequate dose at present and need to start again - much of the problem I suspect is having been far too ambitious and reducing the dose at the same time. Starting over is the sensible thing - hopefully the GP agrees.
Also, when travelling a long distance I never tried reducing during my years of pmr. In fact, especially if flying, I took an extra 1mg to compensate for all the airport hassle etc which can be quite stressful.
My personal tactic was to follow the 10% rule all the time I was tapering.
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