Hi
With my PMR markers in the right figures, I have now reduced very sowly down from the 15mg to the 7mg over the last five months. My Dr has now asked me to stay at 7mg for a month or two before slowly reducing again, however I am experiencing a fair bit of pain in my wrists and some but not as much in shoulder and elbow joints. Asking those who have an opinion if I should stay on 7mg and see how things go ( I've been on 7 for about 1.5 weeks) or go back up to 10mg and start reducing again after a month or so. It was so bad today that I had trouble changing gears in my Ute, told my husband I may need an automatic. I take 5mg in morning and 2mg in evening
At lower doses you are generally better taking all the dose at one go - as early in the morning as possible so any stiffness occurs overnight and the higher shot of pred has more antiinflammatory effect.
Your PMR markers are in the "normal" range because of the pred - not necessarily because the PMR has gone away altogether. The Bristol group get patients to 10mg in about 3 months then keep them at 10mg for a year before reducing further. This seems to reduce the number of flares to 1 in 5 rather than 3 in 5 patients.
The pain you desribe is what I experience when the pred dose is allowing the inflammation to start up. I have elimated the bits that are steroid withdrawal by slowing each 1mg reduction to taking at least a month but my most recent attempt to go from 4 to 3 led to arm pain - in the biceps first and then elbows. Back to 4mg and it is fine. But I have been on pred for 5 years - to be down to 7mg after 5 months is very fast. PMR usually takes at least a couple of years to burn out - and in the majority much longer. Only about a quarter of patients manage to get of pred in less than 2 years - and they are at a higher risk of it returning later for another go. And a second episode can be much more problematic to manage and last longer. Of course it could also go better but everyone I know who has had it twice says its been harder.
The other consideration is that at about 7mg you body is starting to have to make cortisol again. It takes up to a year for the system to settle down even once you are off pred and taking time here is always a good idea. But if you have so much pain you can't change gear and its been OK before - I'd say you are on too low a dose for your PMR at the moment. The markers lag behind - they can take a few months to rise again.
As a general rule slower the better once you are below 15mg - don't be too quick to allow the natural production of cortisol to start to work - Eileens advice is spot on.
Thanks for your post Eileen,
For me it is probably the single most important thing to remember. There seem to be so few studies on PMR & the Bristol study is really significant & a rule to go by when we keep trying to reduce too fast & often pay the consequences. Sadly doctors, both gp's & rheumy's are responsible many times for the hurry up as they don't always have the knowledge needed for proper treatment of PMR.
So I am learning slow & easy does it.
Yes I do see what you mean and have decided to give it another few days taking all the 7mg in the morning if things don't improve then I'll go back up to 10mg and stay there for a few more months. I know you said it over and over stay on 10mg for a year, however as we humans are a funny lot I was hoping and so obviously was my GP, that my staying " put dose" would be 7mg which is more in keeping of our natural production and I would be the exception to the rule and burn out would take place earlier than the 2 years. Guess what - probably not!! Thank you so much for answering so promptly and for everyone who responded. I posted in the middle of the night so as to try and catch you and because I couldn't sleep last night for reasons of pain and brain going into overdrive.