Hi
Thanks for all the great advice. My 85 Yr old husband started on this 2 years ago on 15 mg pred, has got down to 5mg but twice going lower even very slowly symptoms return.
My question is - at his age should we still keep trying to reduce pred? It keeps him very active - swimming , loads of energy- more than me !
He has other health issues- polycaethemia Vera blood cancer which is under control with low dose chemo .
Would be great to know what you think
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Not sure at 85 years of age there is any great need to keep reducing.. but some of that may be in his hands. If he is very active, that may be why he finds it difficult to reduce… and a slower taper with small steps might help him get a little lower.
If he wants to try that - see these for examples -
healthunlocked.com/pmrgcauk...
But if his doctors are happy for him to stay at current dose then that’s really his choice.
If it were me, I wouldn't be worried about it. After only 2 years he is really in the early stages compared to many so I'd say if his body is rebelling any lower, accept it happly for now at least. Often taking away the stress of "I must try to reduce" allows easier tapering!
You are never reducing relentlessly to zero - you are tapering, titrating the dose to find the lowest effective dose. The lowest dose that gives the same symptoms relief as the starting dose did. Over time that often gets lower - but there is no straight line relationship between time on pred and dose. And when PMR symptoms creep back more than once at similar doses it is telling you you have arrived at your destination, for now at least.
And it doesn't matter how slowly you taper, how small the steps are, nothing will get you past the buffers - not until the PMR decides it is time to remove them. Quality of Life is all and it sounds as if he has a pretty good one.
I'm just about to be 90. I decided last month to go up from 5mg Pred (where I was like a zombie with no energy and in danger of developing depression) to 10mg. I have th option of perhaps reducing slightly but my GP is content to allow me to stay at 10mg for the rest of my life. I now have more energy but am very careful to farm out the more active tasks to my children and grandchildren. One of the very few advantages of growing old is that you no longer see the gathering dust. Best of luck to you.
You made me laugh about the dust
I am only 76 - been fighting PMR for 6 years and now down to 7 mg
Thanks for sharing your experience and feedback from your doctor
Good luck with your journey - we are all very different. Ruby Wax said 'the trouble with dusting is that you spend half an hour dusting a room only to find it needs doing again nine months later'.
My version is that dust is VERY patient - it will always wait. One of the downsides of having a cataract op is that suddenly you will be able to see the dust!!! And it is said that if you leave it, it eventually reaches a finite depth and never gets any worse.
My cataract surgery caused instant wrinkles on my face. What a rip-off!
Well that isn'f fair is it ... 🤣
my GP says at our age (74) anything below 10 mg is acceptable and the side effects will not kill us. Keep enjoying life😋
First time I heard that - reassuring to know - I will quiz my rheumatologist next time I see her to get her views
I suspect he might find enough experts to disagree with him. As far as I am concerned, a lot of me agrees with him, I have always taken what I need to have a decent quality of life and for a few years was on over 15mg to be able to function. Only a biologic has enabled me to get to 7mg. But I've already been on pred for 16 years and I'm not 74 yet! Mind you - we can't identify any obvious problems, cholesterol was raised more by the biologic and is now well controlled, no sign of diabetes, bone density OK but have a spinal compression fracture which is confusing but not uncommon, skin now getting back to normal and bruising is more due to anticoagulant medication.
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