I've had PMR since 2015 and started at 15mg of Pred. The lowest I have ever got down to was 5mg.
I am awaiting a full knee replacement due to Osteoarthritis and this is expected in the summer.
When I saw my Surgeon in January he said he wants me to reduce down to 5mg by the time the surgery takes place.
I am currently on 7mg and not reducing at the moment, but the last few days I have had screaming pain in lower back and thighs and aching neck and arms - feeling tired too. I can't think of anything that could have caused a flare and not sure what to do ??
Jules
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jules1955
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Well he might WANT you to taper to 5mg - but is there much point when if you flare you won't be able to do the rehab post-op that is essential for the success of the op? There are plenty on the forum who have had knees and hips done at higher doses than that.
At present though - that does sound very flare-ish. Unfortunately, it isn't always due to overshooting - sometimes it is the disease ramping up a bit. However - how had you tapered from 8 to 7mg and how long have you been on 7mg?
All it needs is for a dose to be very slightly below the dose you really need and over time the left-over inflammation builds up - like a dripping tap will eventually fill a bucket and overflow before you notice it.
And if that is the case - at the very least you need to try the flare protocol: add 5mg to the dose you are on for up to 2 weeks and drop back to the last dose you KNOW you were good at, so 8mg I presume. Then see how you get on.
Hi PMRpro, thank you for speedy reply. After I saw the surgeon in January I thought I would try to slowly reduce but was not feeling too good and thought - well operation is months away, why put myself through this now - so stayed a 7mg which has not been a too bad dose for me. I will take your advice and up by 5mg for a week or so and hopefully I can get back to feeling not too bad at 7mg.
Feeling tired could be adrenals- but doubt they would account for back etc - which does sound very PMR -ish.
Maybe stress over upcoming procedure and the thought of needing to reduce… but are you 100% sure you haven’t done something quite innocuous and set things off.
Change of bed, pillows, different chair/couch, long car ride, walking on uneven terrain [not easy with dodgy knee at best of times].
If there’s nothing obvious then perhaps you do need to treat as a flare- but have you tried painkillers? Guess so, but if not, try them initially..
Thank you for reply DorsetLady, I must admit I am anxious about the operation and also worried about my recovery too. I will take PMRpro's advice and up the Pred and see how I get on.
And do discuss it with your GP and see if some accommodation can be agreed. DIfferent surgeons have different views and while 5mg would be ideal, it simply may not be an option. And the stress of your worrying won't help the PMR.
Sure you are.. is it the first replacement? If it is - you might like to see this - and although for some it’s not as easy as for others, you have to say to yourself - it will be better [and I can say much better] once it’s done and dusted.
When I had a new hip my surgeon wanted me at 0mg. We negotiated 5mg in the end. I do sympathise with the surgeons, I suppose, as they need to minimise risks. The Whittington Hospital has written quite an interesting note on patients taking steroids and surgery. Some surgeons are happy at a higher dose. I would increase now as needed for you, say by 5mg for a week or so then reduce to a bit above the 7mg. Don’t let the PMR take over. whittington.nhs.uk/document...
You mean T doesn’t speak German as well as limited English?! 🤣I reckon he has an English vocabulary of around 200 words and he repeats his comments three times, so it seems he is sounding really wise. You can often fool all of the people all of the time!! Everything in the news is fake news nowadays anyway.
Hi jules. I had a knee replacement in December 2023. I was on 7.5mg and the surgeon seemed unconcerned. I was amazingly tired for at least 2-3 weeks afterwards and could sleep on a clothesline, assuming I could have made it up on to one. Now I wonder if part of that could have been the adrenals struggling to cope. I did try reducing but couldn't do it at the time.
Now, a year later after one or two flares, I am at 6.5mg after following a slow taper and was feeling very tight on joints in hands, neck, knees but I stuck to that dose and it gradually eased. I tried a 6mg dose on Friday and the sore joints returned plus hand and finger joints so I have gone back to 6.5mg. I shall stay here a while longer before I make another attempt.
I do somatic exercises and I walk every day. I follow a keto/low carb diet as closely as I can most of the time. Just had a medication review and apart from cholesterol being a bit high (which it will be on keto) everything else is fine. The sore joints feel more like arthritis than PMR and I am still able to raise arms etc. - when it started I was just sooooooo stiff.
In my case there is quite a lot of stress at the moment. We were given an exchange date of 26 Feb with completion on 28, so 2/3rd of the house is in boxes and we have got rid of things that we know we would not use at the next property. However, we are still here - someone back in the buyer's chain is wobbling. It's a lesson in living simply and recirculating the few clothes you have kept out of boxes - likewise the bed linen etc. Thinking about it - no wonder my joints etc. are aching - moving boxes around and garden pots is quite heavy work.
Just one more interesting point - I kept in touch with two ladies on this group as we were all stuck at the same level - around 7mg. One of them (you may still be here) has amazingly come off pred after a severe bout of diverticulitis and when I last heard said she felt fine. Mind you, she has gone through an awful lot of surgery etc. and I would not wish that on anyone at all - my husband suffers as well - nightmare.
Anyway, I digress. If you can't reduce below 7mg then you can't and although I realise that the surgeon will want to do the operation under the best conditions then unless you have other problems/comorbidities that are concerning him I would have thought it should be perfectly possible. Good luck!
Knee is OK and function much better than it did - glad I had it done. The early recovery period is challenging but it's not for too long - milestones for me were 6 weeks, 8 weeks and 12 weeks. It is more than worth it. Get plenty of meals planned, cooked and in the freezer as you won't be able to carry much or stand much at the beginning. Let me know how you get on!
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