Hesitant to take a higher dose of prednisone. Symptoms returning.

[Heinrich7]

PMR since 2018 and on Pred since July 2018. Rheumatologist wants me to taper and go off. I’m at 2.5mg., BUT am off work because I felt heaviness and fatigue. Now have other symptoms of soreness and stiffness in shoulders arms neck hips and legs. Like when PMR started. I’m afraid of crippling immobility that i had in beginning. Will call RA tomorrow to see if I can up my dose. What are other opinions?

Do you think if I remain on this dose, symptoms will eventually go away? My ESR was first 0, then 5. And tested again recently and will also get results tomorrow. I appreciate your advice. Keep safe during these trying times.

[HeronNS]

healthunlocked.com/pmrgcauk...?

[Heinrich7 in reply to HeronNS]

Not the response I wanted. I am in isolation with respect for covid19.

[PMRpro Ambassador]

You need a new rheumy who understands how PMR works - you don't take a dose of medicne and then take less and less and stop irrespective of how you feel. You start with a higher dose than you are likely to need and then taper slowly to find the lowest dose that manages the symptoms as well as the starting dose did, it is a process called titration. You reduce the dose until the symptoms start to appear - or, if you are lucky, when the ESR or CRP start to creep up. Either way, you then go back to the last dose that kept the ESR stable and where you had no symptoms. It doesn;t mean you won't get off pred, just not yet.

If you stick where you are, I don't think the symptoms will go away, it is more likely that the inflammation will build up again until, if you ignore it, you are back where you were. Which, as you say, you don't want. PMR is a chronic disease and the median duration of management with pred is 5.9 years. Only 1 in 5 get off pred in a year, by 2 years only a third of patients are off pred. Half of patients need more than 6 years and 40% are still on a low dose of pred at 10 years.

You have got to below 5mg in about average time. Don't let an over-eager and poorly informed doctor spoil it when you have done so well. A dose below 5mg is causing little in the way of adverse effects:

medpagetoday.org/rheumatolo...

[Heinrich7 in reply to PMRpro]

Sorry. In defence of my rheumatologist, I was not experiencing all of these symptoms when I last saw her - only the fatigue and heaviness. On the other hand, she did NOT recommend going up in pred. either if it got worse. So there you are probably very well correct in saying she doesn’t understand how PMR works and could be over eager to just get me off.

So when i call her tomorrow will see how things go.

Thank you so much PMRpro. You answered my question. I kind of knew within myself, but needed more confirmation.