First rheumatologist appointment on the 16th

Hi everyone this is my first post. I'm a 57 year old female and have had pmr for just over 3 years I've been as low as 4mg of pred but at present on 11.5 the last 2 years have been a roller coaster and every flare needing a higher dose, I have never reduced more than 10% usually 0.5mg above 10mg and 0.25mg below 10mg.

GPs at a loss now so been referred to rheumatologist which I'm pleased about just a bit nervous on what to expect.

[Celtic PMRGCAuk volunteer]

Welcome to the forum although I'm sorry to hear that you are encountering repeated problems in trying to reduce the steroids with continuing flares even after 3 years.

From what you say, it sounds as though you have been reducing in the recommended small decrements but I'm just wondering whether you have remained on each new dose for a sufficient time before going to the next dose. Also, have you been checked for a Vit D deficiency? Such deficiency can cause pains somewhat similar to those of PMR in which case a Vit D supplement can help.

Don't feel nervous about your forthcoming appointment with a rheumatologist - your GP has been wise to refer you with the problems you are experiencing. As to what you can expect from the appointment, it will help the rheumy to help you if you can make a brief list of your experience with PMR since diagnosis (dates, dosages, flares etc). If you are someone who had raised blood markers of inflammation at diagnosis, then it will also help if you can present him with latest blood test results (ESR and CRP) - perhaps your GP will arrange these a week or so before the appointment so that the rheumy has the results available.