15 mg pred for a couple of months and 12-13mg since end of September. Split 5mg in the morning and the balance at bedtime
Felt ok...ish most of the time but no energy, no golf, no fun, no life apart from struggling through the day at work. Sleeping ok
This week i have been feeling v achy in my shoulders and arms last thing in the evening and then first thing in the morning. Then last night i am awake bang on 4.00am with serious arm and shoulder pains, tingling hands. No rhyme or reason for this change of fortune.
Have to get up and watch a film with a couple of ibruprofen (Great Escape ironically). So now completely knackered.
So do I go back to 15 ? Stick at 13 ? Go higher ? Drink and smoke myself to an early exit ?
I have been left to my own devices on dosage by the GP, who you cannot get to see.
The prospect of this for years to come is killing me...slowly.
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NickWarwick
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It does sound like a flare doesn’t it? You could try taking 5 mg extra Pred for a week to 10 days and then return immediately to your current dose, in the hope that this nips it in the bud. This has worked for me and others in the past.
Splitting the dose didn’t work for me. Taking the whole dose at about 2 am seemed to head off the pain before it got going.
To compound your misery - we shouldn’t take Ibuprofen with steroids or any other non- steroid anti-inflammatory pain killer. It is dangerous for the stomach. Good luck, this too will pass.
Oh dear.....sounds as if you’ve “hit the wall” in marathon parlance! Very discouraging, but it’s not terminal...honest 😳
Suggest you get yourself back to 15mg initially - and see if things improve, 5-7 days should tell you. If not better then maybe 20mg for same time scale and then back to 15mg.
Whatever way you have to go, at 15mg stay there for a month, and then reduce monthly 1mg provided no return of symptoms.
Personally I would go back to one dose am rather than split (until you get back on track) - but that’s just my opinion.
But split is better 2/3rd am:1/3rd evening for future reference.
I think you’ve gone below the level you need. Maybe because you are back at work? Back to 15mg I think! You will get back to golf later. Give it time. Please don’t smoke or drink yourself into an early demise! You just need more prednisolone.
Are you a big bloke? (Tall, muscular, weight?) And what level and sort of activity? It may be that 15mg wasn't enough to empty the bucket of inflammation much so you have a very narrow line between OK and not OK. The timing does suggest that what you have been at recently is a tiny bit too low for what you are wanting to do - the left-over inflammation has taken a while to overflow, it didn't happen overnight.
And as SJ says - maybe one dose very early morning may work better. And a diary of dose, food, activity and symptoms MIGHT shed some light in the problem. You can't expect to just take a pill and be back to normal, it doesn't work like that for the vast majority. Pred is a management strategy, not a cure. And most management strategies don't work in isolation - you have to do your part too and look for places you can tweak things to improve the result. Diet, exercise, expectations - somewhere there are optimums and only you can find them. We can make suggestions if we have some info though.
Thanks PMRP . Not that muscle bound sadly. 5'9'' and 11 stone 11lb...ish.
Have lost half a stone sine this started surprisingly.
Used to play golf once a week, but not any more irritatingly. No chance of finding me at a gym or on a bike.
Pretty reasonable diet i think. Never put on any weight whatever i do
Definitely drink too much and smoke a bit.
Decided to cut down the beers recently which has definitely not helped. Perhaps i should drink more.
Probs a stress issue. Work is a nightmare at the moment and i am also routinely triggered any time the BBC news doom-mongers are on the TV. Maybe Boris will save us all but i am not banking on that sadly.
Ah well - I didn't really want to mention that but smoking isn't helping vasculitis problems. Alcohol? Who knows - for some people it's a problem, or certain sorts of alcohol are a problem. In another health context I can drink my wine, I have had to give up G&T. Beer - can't speak to that, disgusting stuff!
The stress at work is a definite problem - PMR feeds on stress. That needs some attention. The Beeb news is easy - don't watch it! I don't watch their version of the UK - it winds me up too, and I don't live there! My poison is Sky News - a very integrated team of ethnic minorities and women who do have a rather different take I find. And you can hit the kill button to avoid the bad bits. As for Boris? Yeah, well ...
Think i might buy a winning lottery ticket tonight, relocate to a zen tepee, throw away all electrical equipment and commune with nature somewhere in Monmouthshire. That should do the trick.
Exactly: like we are still alive and get up in the morning for a start!
Germany has just declared parts of Italy as risk zones and you must quarantine when you get home - cheek when their infection rate is as bad ... And shortly after that Denmark did the same for Germany. So while the tourist business is complaining, it is blatantly clear that a lot of people in a room leads to an increase in cases a week or two later. So the locals really don't object greatly I suspect...
Hi Nick, everything everyone else has said, and we all fully understand how you feel when you suddenly get diagnosed with something you had never heard of and which for the time being will probably turn your old life inside out. Once you manage to get your head around the fact that you can't necessarily live the way you did before, that part gets easier. I started on 30mg inJune managed to get 13mg a week ago but now back on 15mg. I take all my dose at around 02:00 every day, which for me, gives it time to get into the system before the nasties start to appear around 04:00. You may need to get used to new sleep patterns as well, but that is easier if you are not having to work. Keep smiling.
A bit late to the Party sorry, the girls have pretty much said it all, back to 15mg for a month & then come down either by 1mg drops or by no more than 10%
It’s far too cold to be worrying about golf, no one wants to take time off work especially at the moment but could you reduce your hours and your workload? I truly believe if l hadn’t worked through PMR both before & after diagnosis l’d have done much better.....
Get this inflammation under control & feel better soon.
Hi Nick -- You've had some good replies but thought I'd add I got PMR in my early 50s and while it is difficult at any age it can be extra hard to try to also maintain full-on work in a job with the body and mental tiredness and the pain. I did one work trip about 9 months after diagnosis and just remember the total exhaustion of having to keep up with a group walking to a venue, and the impossibility of realising I had to get a (small) suitcase up a long stretch of step! So be kind to yourself and also keep in mind that you may find you need to give yourself extra time or cut back on things -- I could not do any sports except walks and swims, for example, and I was quite fit going into it all. FWIW I too lost weight -- this is one less common side effect of steroids and also can be part of PMR. It stabilised at about 10 lbs less than I currently weigh (am off steroids for 7 years now). Just to reassure that this sometimes also can be a PMR/preds experience! Best of luck with the flare and hope you get back to slow reductions soon.
Hi Nick. Fairly new on here myself. Diagnosed Nov 2019 but only found this amazing support forum Sept 2020 after a problem with tapering too fast. I don't have the experience to offer the excellent advice and suggestions I have read above but reading widely on this forum , for me, has been the difference between struggling with this mentally and starting to accept and adapt. I have always been a very busy, active, involved person both professionally and personally. So I have 2 big hurdles to deal with. The PMR itself and my psychological approach to the lifestyle restrictions. The latter has been extremely tough for me. I have had to learn that chairs are for sitting it in....so to speak! What tipped the balance for me was reading people's personal journeys, both the highs and the lows and then being aware that the overriding atmosphere is positive and comforting and there is light at the end of each long dark tunnel. I still wrestle with the head going into action before considering the body, and suspect I always will, but am a lot better at recognising myself doing it and calling a halt.
There was some helpful positivity around on Friday. So thanks for the support. However.....
Don't want to bring things down but my perception is that PMR is actually the most unfair and just plain random illness imaginable. And with no end game, a total and utter disaster from where i am sitting.
Here's why
Went back up to 15mg on Friday after an obvious taper fail from 15 to 12.5mg
Woke up at 1.30 am Saturday morning in considerable pain (arms , shoulders and neck). So that was a great start. ! Why 1.30 am,3 hrs after 10mg dose. ? F... knows. Normally 4.00 am is an occasional problem time for me.
Sunday and Monday nights slept pretty well. So the new regime must be working one might think. But...
This morning 1.30 am (again) woke up with the absolute worst pain i have had through this entire experience. Top of left arm mainly. Genuine cry out loud pain.
No change in circumstances, activity, diet etc etc. What is going on ??
I know that you mean all well but please dont suggest that i de-stress my working life. If i dont work then i will eventually be bankrupt and homeless. And i fancy that might add to the stress levels a wee bit !
I just need a viable solution to this nightmare. Oh......hold on...there isn't one is there......
I suggest you repost this as a new thread as relatively few people will get a notification of your reply to Florrie - it's just the way the forum works.
My immediate reaction is that this may not be "just" PMR - isolated joint pain is rarely part of PMR and is possibly be more likely to be an injury or some form of inflammatory arthritis.
However - I know you don't want to hear this but if you think PMR is bad and unfair I could tell a lot of stories. At least PMR is an illness that strikes us later in life, doesn't kill and for most people goes into remission sooner or later as well as being manageable fairly well.
I will see what happens over the next day or two i think
Not sure if inflammatory arthritis is better or worse ?? Or if there is a better drug regime solution and end game for arthritis ?
At the moment i feel that everything stems from my neck and shoulders. Crap posture at my desk for sure. But i also had a prolapsed disc in my neck about ten years ago which went undiagnosed for about 6 months. Ended up with an operation to fuse two discs together. Which worked a treat at the time.
It could well be entirely neck/shoulder issues, spasmed muscles and bad posture. You are entitled to workplace adaptations under disability legislation and that can make a big difference.
Inflammatory arthritis is usually lifelong - there are more options to try if one thing doesn't work but until you find the right thing things can be a bit unpleasant.
Don't fall into the trap of thinking a different rheumy can magic it all away. Any of them need time and the right clues. None of them can offer an instant cure - even if Dr House and co suggest it is possible. Real life medicine isn't like that and sometimes we have to accept that and find a way around the problems.
It would be really helpful if you completed your profile with a few more details.
Oops....correction......chairs are for "sitting in".
And the lack of golf I fully understand! I was only an occasional player myself but my husband is very frustrated with his increasing inability to manage a full round due to age related reasons and other conditiins (not PMR).
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2 weeks on 15mg - what next?
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