Increasing prednisone

[Glyngin]

Diagnosed PMR May 2020 & started on 20 mg.Did slow titration to 4mg & was fine until 2weeks ago then ugh pains+Weakness lethargy.Increased to 10mg with no effect yet.If i increase to say 20mg or 15mg do I then have to titrate slowly again.Thought I was being really good decreasing 1/2 mg a month when I got to 7mg.Any advice please am really despondent

[SheffieldJane]

Do you think that you got carried away and overshot your ideal dose for now? The aim is not to get off Pred altogether but to achieve the lowest possible dose that provides relief from symptoms. A year is very quick to be out of the woods.Alternatively have you hit a period of stress or illness that has set you back? We are super sensitive to that and there is so much about isn’t there?

Most likely at your stage though is hitting the Adrenal shortage that would explain the weakness and lethargy. Your Adrenal function has been switched off since you were on Prednisalone for about 3 weeks. The body has to start producing Cortisol for itself from about 7 mgs Pred downwards. It can make you feel awful. You need an ultra slow and careful taper, with a lot of pausing. You can have your Adrenal function tested for potential recovery when you are on less than 5 mgs. That is a Synacthen Test from an Endocrinologist.

I am surprised that 10 mgs hasn’t done the trick. Perhaps patience is needed to analyse the effects of your dose adjustment and a period of stability on a steady dose. I stayed at 7 mgs for a year, unable to reduce until something shifted. It would be a shame to start again, but you may have to. In future, leave a good month between drops perhaps. You just can’t hurry this disease, it can take years, with the best will in the world.

[DorsetLady PMRGCAuk volunteer]

Like SheffieldJane am surprised that 10mg hasn’t worked....you could try 15mg for 5-10 days, then drop back down, firstly to 10mg for a week, then 7.5mg for at least a month before you trying tapering again. But you must remember you aren’t reducing relentlessly to zero , you’re trying to find the lowest dose that controls symptom, and you’ve obviously gone below that.

Doesn't matter how slow you taper if you’ve gone below that optimum dose you are going to have a flare.

[Glyngin in reply to DorsetLady]

Many thanks will try 15mgs but have been so reticent to increase again especially getting to 4mg but guess I have to.Golf course opens tomorrow & have been looking so forward to playing

[DorsetLady PMRGCAuk volunteer in reply to Glyngin]

Can understand that, my neighbour is straining at the leash as well! But you won’t be able to play if you’re in pain or lethargic will you?

Agree that the weakness & lethargy might be adrenal related - but not the pain.