Hi everybody
Just been reading all your thoughts on tapering and would like to share mine .Guided by Eileen's advice i have managed to get down to 5 mg since Feb 2015 . I had started to reduce further but broke my wrist so will leave it over until i get the cast off .At the moment i am pain free except a slight bit in shoulders and arms in the morning .Sorry to hear that some of you are having a harder time . Will share again when i see how further tapering goes. Until then keep well .
Hello daisylazy, sorry to hear about your wrist. I broke mine in 1989 and recovered very well. I wish you a speedy recovery too, and may I add that I think you are very wise to hold off any further reduction until your recovery. Regards, tina
Great!!!! Fingers crossed you are able to return to your reduction. But a few months at 5mg is no bad thing - one top PMR rheumy likes his patients to hang around there for up to 9 months - makes the rest of the reductions simpler!
I wonder why the Rheumy in general are so hard to get the point of the tapering thing!!!!
Based on people's experiences we rad here we may say that this is a serious point and the solution is when we take the solution in our own hands!!
So let's do it for our own sake!!!
The best to you, Daisy and to all!
Keep safe, keep healthy!
🌺
Please read on the 2nd paragraph : ' we read here...' Thank you.
I think that the big "disconnect" between patient's needs and rheumy's prescriptions is the fact that the patient and doctor might communicate so infrequently. So the rheumy has to make an estimation, i.e. take a wild guess, as to what the patient's need for medication will be and how this will change over time.
Somewhere between the published information that they might read and their own experience with however few/many patients that they may have treated in the past, a decision comes out of this in the form of a prescription.
My advice is to both read here and to be communicative with the rheumy as frequently as seems needed. I don't hesitate to email my rheumy, but only did so finally when my prescription's last allowed refill was running low after two years!
I don't know how then at that point that he saw fit to prescribe hydroxychloroquine (plaquenil) in order to further reduce me off of just 3mg/day (now 2mg/day), but I simply don't take the new prescription based on all that I have learned here and elsewhere online.
I am doubly suspicious of these medications which instruct that a patient must take the pills for no less than a certain lenght of time before any god results, and which should than not be discontinued without doctor's orders. I also declined to take an identical sort of prescription for Lyrica that an orthopedist had prescribed for a disorder associated with my broken wrist from three years ago, and I made a full recovery from that on my own.
Mainly because they use pred so differently in other rheumatic disease - usually to reduce rheumatic arthritis flares for example where you use it to manage the pain due to inflamation in an acute flare until the other DMARDs being used take over. They forget or don't understand that PMR is a chronic problem - and there are no DMARDs. And they are terrified of the long term side effects of steroids - which can be bad and were so with the high doses they used at first until they realised the problems. That generation taught their juniors who then taught their juniors - and so on.
I too have been guided by Eileens tapering method,In Jan 2016 I stopped my Pred for 3 months as my ESR was 7 and I was only on 1mg.However after 3 months the pain and stiffness had set in and ESR was 21. and climbing, My Rhuemy put me back on 2,5mg daily and after 6 weeks ESR is 5, I am tapering to 2mg at present and will continue to taper, I developed PMR in April 2013.I am at present pain free.I have been diagnosed with Osteoarthiritis Inflamatory but pred makes it pain free,Its a long journey to be pred free.