Female 66. Diagonised and have been on predisolone for 5.5 years.
For the past few months I have been reduced to 2mg per week.
My GP had me on waiting list to be referred to a rheumatologist.
Had a consulatation in March past. Bloodd taken and he advised me to reduce to 1.5 mg per week. Had done that successfully with no drastic side effects. Had a follow up consultation with consultant last week. He asked me if I would be willing to stop meds completely to which I readily agreed. I then asked him what the results of the ESR test were. He said they had come back inconclusive. I then mentioned that I had my ESR taken within the last two weeks. Result was 49. He then said that was too high and advised me to increase the dose to 3.5 per week.
Totally confused. I am a quite active person.
I suppose I would suffer from some aches, stiffness and tiredness.
Your opinions would be greatly appreciated
Hi Dolores. Are you seriously on 1.5mg of preds per week and your doctor is trying to get you a rheumatologist. My view would be to live on 1.5mg a week if it is needed for the rest of my life or try to stop totally. I am still at 13mg a day (91mg a week) so have a long way to go.
ESR is not specific to PMR - it will rise due to any infection. It is actually recommended that you do NOT increase a dose as a kneejerk reaction to a single raised ESR or CRP. It should be repeated to see if there is a trend. 49 is definitely too high - but in the absence of symptoms watchful waiting would have been a better option.
Blowed if I can see why your GP sent you to a rheumy at this stage! If you really have got to 2mg per week then that is fine - it is a very very low dose, there will be next to no problems with it and you could stay on it for years (and I would!). But you wouldn't be the first person to stop even such a low dose and have a flare within weeks! In fact I assumed it was 2mg/day - which is also a very low dose - until I read tavidu's post which made me look more closely!
What has your ESR been over time? I seem to have a quite high average ESR. Do you have your CRP taken as well? As tavidu says if you are only taking 1.5mg of pred once a week, I would not be worried. Particularly as you are not in pain. That is a better way of seeing if you need to increase your dosage. ESR can go up if you have a cold or a bug too. Have you seen a rheumatologist before? I assume you have not been waiting over five years to get an appointment!
Hi. Many thanks for reply. First saw a consultant when I was diagonised over five years ago. I am inclined to agree with you , tavidu and Eileen .
i am reluctant to increase the dosage at this stage despite the advice from rheumatologist. I thought after this period of time the PMR would have burnt itself out though. Confused and disappointed with rheumatologists advice
A quarter of people can be off pred in up to 2 years - but then are at an increased risk of relapse later. About half take up to 4 to 6 years - you aren't quite there yet, but near enough - and the rest of us really take our time, sometimes having to remain on pred for life. The dose you are on is fine for a very long time.
As for the birning out concept - I was told recently not only by someone on a forum but also by rheumatologists at a conference I was at that it is being realised that PMR isn't as simple as they thought - it is very heterogenous and may not always burn out. Which is good and bad news in some ways - they can no longer look down their noses and say "it can't be PMR if it lasts more than 2 years" (which I have heard) and compalin if you happen to need pred longer. Unfortunately - a lot of them don't know this!