I started my PMR journey almost 4 years when I was 49, and after a couple of bumps along the way am now at 1. 5/1mg of Prednisone using the DSNS method. For a couple of months or so, I have been experiencing returning stiffness in my hips, thighs and shoulder blades, although the exact time period is hard to tell, as it has been very gradual. The stiffness is not unbearable, but definitely uncomfortable. I work as a gardener and notice it most when I am switching working positions from kneeling to standing for example, or climbing stairs, as well as getting out of the car. Would I gain any benefit increasing to 5mg? For how long would I need to do this and would I need to restart DSNS from 5mg or could I just restart at my current dose? My markers have never shown as elevated before and I don't know if I'm still assigned to a rheumatologist as have not seen once since before the pandemic. Am happy to arrange the increase in PRED with my GP if I can. One last thing, should the end result of the PMR experience be absolutely no pain, or pain that one can live with. The narcolepsy like fatigue I have accepted as a given. Many thanks for any suggestions.
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AllyRobson
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You may only need to go up to 2.5mg or 3mg rather than back to 5mg- try that initially…and see if enough. At such low doses you’d be surprised how much difference 0.5mg makes. Stay there for as long as you need to. ..Prof Dasgupta has said in the past he’s happy to leave some of his patients on 2,5mg for long periods, even indefinitely if required. Hopefully you won’t need that.
Obviously if a small increase doesn’t improve things, then 5mg for 7-10 days - and then drop back down to 2 or 2.5mg…in one step, stay there for a month before restarting taper.
Ideally no PMR pain once in remission, but as you know that doesn’t mean no pain at all! Life has other things to throw at us.
Never apologise for asking any question - it not only helps you, but others as well. If the higher dose is enough it should only take a few days——if it’s not working within 5-7 days then I would say it’s probably not enough. ..,then try the 5mg.
The same thing has just happened to me at 1mg. I went up to 5mg for a week to knock the PMR on the head then dropped to 2.5mg for three days and then 2mg for three days then back to 1mg.
If it were me I would try 5mg for a week and then drop straight back to 2 or 3mg. I suspect you have just overshot the dose that keeps things happy - and Prof Dasgupta told us last summer that he often keeps patients on 2-3mg long term as it reduces the risk of relapses.
Very low doses and safe longer term - especially for someone working with PMR.
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GCA patient, with tapering issues after 4 years
PMR 3.5 years & holding
4 mgs for a year now
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GCA return after 4 years 😏
