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
Written by
jules1955
To view profiles and participate in discussions please or .
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.
Me too piglette, I hate all this stuff coming into my sitting room but hubby watches news relentlessly, says he needs to know what's going on. Er, no, you don't. News didn't used to be available at all hours and we did fine then 😒
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!
The simple answer is YES.You can have a flare when you are not reducing , and even after you increase the steroids dose or are on high doses.
Why?
Because a Flare isn't caused by the reduction in steroids it's caused by Stress which in turn produces an increase in inflammation or activity from whichever inflammatory or pain condition you have and then this produces pain .
Stress, is either physical or mental activity, either positive or negative , that is too much for your body or brain to cope with at its current health level. Anxiety is just one form of negative mental stress, but stress can also come from positive things like doing a lot on holiday , making changes for retirement, family events or increasing the fun things you do in daily life.
If you use steroids the flare may indicate that your condition is Active and that the dose you are taking is not enough to reduce the inflammation and the pain.
At that point , you may need to increase the steroids dose temporarily to help treat the inflammation that has already occurred, but if the inflammation or pain is not caused by PMR alone you may also benefit from increasing or getting treatment for your other conditions and causes of pain , and by making changes to the stress you are under to manage the pain.
The most important thing is to take a moment to work out what is causing the pain.
Is it a PMR flare alone , or could you also be experiencing more inflammatory pain from the OA or the deterioration of the knee joint?
Other conditions may benefit from an increase in other pain medication or self care not just an increase in steroids.
Or, could there also be an increase in nerve pain ?
If that is possible it may require nerve pain or relaxant medication to help reduce the pain you feel, or is the increased inflammation caused by Anxiety which can cause various pain symptoms and inflammation in itself.
During the period when you may increase steroids or other medication you are only treating the increase in inflammation and pain that has already happened and caused the " flare" but the important thing at that point is to work out what is causing you additional Stress so that you can make changes to that to reduce it and prevent a new flare from happening .
Your Stress may not seem to be caused by something you are doing or feeling , especially if you think you haven't changed anything , but actually making no changes to your activities can also cause Stress if your body or mobility, or a part of it , has suffered more decline.
At the moment , for example , your knee requires replacement .
So , if you are still struggling to do the same things you usually do , even if you do them more slowly , and you struggle with your knee movement to do them you will still be increasing Stress on the knee and the rest of the body.
The knee may be the core reason of the inflammation.
You will have changed your gait and posture to help reduce pain and pressure on the knee while you try to do things that trigger pain in it.
This causes you to put more pressure on parts of your body that helps you to use the knee , and increase tension in your body to keep doing the activities that bother it.
This additional stress and postural tension increases the stress on parts of your body that are already weaker because of OA or PMR , and over time that Stress makes your pain or inflammation worse in those areas.
Even young people whom may get a knee injury overcompensate in their posture and walking style to prevent pressure and pain in the knee , and they will say the same thing that it's their hips , back , other leg , neck and shoulders that end up hurting more and becoming stiff because of muscle soreness from using muscles differently happens because of it.
Your nerves may also be affected by the inflammation and pressure put upon them and you will have more intense nerve pain which won't be being treated by steroids or inflammatory pain medication . You become more hypersensitive to pain and the severity of pain from all your conditions can be worse and last longer even after the inflammation has been treated and managed if your nerve pain is not being treated. Considering a short trial for a month of a low dose nerve medication, like Pregabalin or Duloxetine may help prove if nerve pain is also a factor and give you a way to manage it until after your surgery and knees recovery.
If you don't change the activity and either avoid or adapt activities that are causing you Physical Stress it will eventually cause more inflammation and then pain from any of your conditions.
Your body has changed and it can't manage the same things without causing inflammation and eventually triggering disease activity in any of your health issues, so until your knee has been repaired you will need to reduce what you do , especially if you need to prevent the risk of further inflammation so that you can temporarily reduce your steroid dose for surgery.
Mental Stress , Worry and Health Anxiety, also causes tension throughout the body and oxidative stress which can also cause inflammation.
Any inflammation is felt more severely in parts of the body that have already been weakened by muscle or joints conditions.
It's hard to do , but it's necessary to use relaxation, breathing exercises and distraction techniques to keep worry in control to prevent mental stress adding to physical tension and inflammation.
Treatment for nerve pain and temporary health anxiety is often the same when it comes to Self care and medication.
The point is really , even if a Flare occurs in PMR alone , it's not the reduction of steroids that cause it.
It's the increase in the effect of Stress that increases general inflammation in your body and potentially triggers PMR activity causing a Flare.
The steroids only treat the inflammation, they don't prevent the cause.
Pacing Yourself is what reduces the stress and reduces the risks of a flare no matter what your dose may be at the time.
It's only by isolating the cause and making changes to the stress out on your body or mind that you can help prevent increased Stress and reacting to the signals of Stress that your body gives you quickly that you can reduce the risk of triggering a Flare in inflammation or any sort of Pain , whether it is PMR related or not.
Even your " Old PMR Normal" which was fine on higher steroids doses when your knee was in better repair can be too much.
Often you need a number of " New Normals" with PMR or a chronic pain condition , which may involve you taking things even slower or having more rests as your medication doses decrease to give your body the chance to manage stress and cope with recovery.
Good Luck with the surgery , hope it's as early in Summer as possible, take care , Bee
"a Flare isn't caused by the reduction in steroids it's caused by Stress which in turn produces an increase in inflammation or activity from whichever inflammatory or pain condition you have and then this produces pain"
I don't agree. It would be more accurate to say "a Flare isn't always caused by the reduction in steroids ", come to that, nor is it always caused by stress. The only change may well be just going from enough pred to not enough pred just by reducing the dose. And then the flare is due to unmanaged inflammation building up over time, entirely due to the reduction in dose.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Reducing when hit again
Flare or not
What is a FLARE? and when is a Flare not a Flare ????
CAN A HEADACHE BE A FLARE
Is some pain necessary when gradually reducing steroids ?
