Firstly, can I thank everyone for the great wisdom and advice gained through experience, shown by the writers on this site. I would just like to get a confirmation on my progress on PMR and a recent set back.
I was diagnosed in April 2018 following a sudden onset. Starting at 15mg I have moved progressively in stages to 4.0/4.5 in March 2019. All fine without any recurrence of any symptoms whatsoever or reaction to Pred. That is until a week ago when all the symptoms returned in 24hrs.
I immediately upped my dosage to 5.5 and then - having looked back through previous saved posts on this site - upped further to 8mg. I am 90% free of symptoms once again and this improves each day. I plan to carry on at this raised dose for a further 3 or 4 days and then return to 5.5 mg ie 1mg above where I left off.
Longer term I will maintain at 5mg for 3 months - to give the adrenal system time to stabilise and return to full function - before attempting a DSNS taper. Any comments advice on this plan would be really much appreciated, especially anything rooted - in personal experience or evidence based research.
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Sounds good to me - to get to under 5mg in less than a year is superb. You have found what is too low - it is difficult for me to know how fast you were reducing but remember it is possible that you crossed the line a while back and the seeping in of the inflammation has been very slow.
I was aiming to stay at 5.5/5.0 for a while but wondered if there is anything you could point to from an evidence /research base that might help on the sort of duration. (I remember the Bristol research pointing to a longer stay at 10mg) Also is there any useful tests that I might reasonably ask my helpful GP to commission to verify my body's resumption of adequate cortisol levels?
You are successfully well past the 10mg reasoning. Rod Hughes in Chertsey likes to keep people at the 5mg level for up to 9 months - it seems to allow for better tapering to the end, low enough to prod the adrenal function, high enough to feel well. I'd say the best approach now is to try 1/2mg at a time but wait a couple of months first - often just doing that will let you get down another couple of steps. Sometimes it takes 3 or 4 attempts to get over a hurdle. Just be patient and don't try to force it. As long as you feel well I wouldn't worry about asking for a synacthen test until down to 3mg - that is plenty low enough to get a meaningful result, above that isn't really.
Yes - you have done well to get down to 4/4.5 mg in the time since you were diagnosed. My PMR certainly did not let me reduce at that pace. I am now at 2.5mg after over four years, but at least without a flare.
I would not presume to add to what PMRpro has written ( she is the one whose advice I have always followed! ). The only piece of advice I would give is that PMR is very good indeed at making a mockery of the best laid tapering plans, and it does get more tricky at the lower doses.
You might well plan to stay at a level for a given time, but, if the PMR is still lingering, then it much better to listen to your own body. Also, I have found that the PMR fluctuates. You feel fine for a period of time, then, without any change of pred dose, it can make itself felt a bit.
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