I am still suffering pain despite being on Prednisolone starting at 15mg since around October. My GP lowered it to 14mg despite me being in pain and now she has lowered it again to 13 now I am in ever worse pain and cannot lift my upper arms as they feel heave and cause very severe pain to lift I have to keep relaxing my arms down onto the bed so I can't do anything other than watch something and I am also suffering with severe pain in my hips mainly my right hip and I cannot turn my head left or right and most certainly cannot turn to look behind me due to very severe pain. I have to keep dropping my head forward to put my chin on my chest or to look up just to give me a moment of less pain.
I go to see the Rheumatologist Monday; how can I go about telling him that I do still need 15mg at least?
Should I still be needing 15mg?
Should the GP have started tapering?
Never been on steroids before and all of this is new to me, I have never had PRM till now that I knew what it was
GP took me from 15 one week to 14 the next week then from 14 one week to 13 the next week
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LunaSkie
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You poor thing, it seems your GP is not very knowledgable about the taking of steroids long term. You are not on them for a short time like a lot of their patients. The trouble is pred is cunning and if the steroids are not enough to keep it in check it jumps up and bites you. You should not reduce unless you feel OK, it sounds very much as if you are currently on too low a dose. I had a rheumatologist who ignored the fact I was in pain and insisted I reduce. I solved the problem by dumping the rheumatologist!!
Thank you piglette, I know I was suicidal before going on the steroids and once on them although I was still in some pain It was amazing how majority went and I was no longer suicidal, I am creeping back to an unstable mental health. I cannot wait to see the Rheumatologist as I want to know from him if its PMR or not if what it is if it's something else, no idea what else it could be, mind?! but I guess I will find out Monday. Cutting a full mg in one week not tapering throughout the week down to 14-13 such as 14 Monday, Tuesday, Wednesday, Thursday, 13 Friday, then Full dose Monday, Tuesday, Wednesday, 13 Thursday, Friday and so on... I'm sure has contributed to my fast heart rate, fluttering inside my chest, and shaking
Make sure you've got someone with you during the meeting with the rheumy who's prepared for an argument. That way the rheumy won't treat you like a doormat. You really need to be taken to the rheumy in a wheelchair, so that he/she can see for themselves that you're unable to function as a human being on the current dose the GP is forcing you to take.
Also write up a set of bullet points that you want to go over, such as the information you've written above. May I suggest something like this for describing the pain you're in?
* Bedbound due to severe pain whenever any movement is attempted
* Unable to lift upper arms as they feel heavy and cause very severe pain to lift. Have to keep relaxing both arms down onto the bed so unable to do anything other than watch something on TV
* Suffering with severe pain in both hips but more in the right hip
* Unable to turn head left or right and most certainly cannot turn to look behind due to very severe pain.
* Have to keep dropping head forward to put chin on chest or to look up just to give a moment of less pain.
As a further set of bullets, how about this, to get over to the rheumy your disappointment in your treatment so far?
1. Been on Pred since last October, and expected that by now you'd be able to move, and not be bedridden and in such severe pain.
2. When first put on Pred, the 15mgs per day reduced the pain to a much more manageable level, although it didn't remove all the pain and stiffness as you expected.
3. The GP set the low starting dose of 15mgs, when a higher dose might have removed ALL the pain and stiffness.
4. The speed of reduction the GP has foisted on you has not helped at all, but instead has put you back into the situation you were in before starting on Pred.
With luck and a following wind the rheumy will have the good sense to increase your Pred dose to at least 20mgs per day to clear out the current inflammation, and agree that you should stay at that dose till ALL your pain and stiffness is gone. Only then should they ask you to begin a VERY slow taper.
Furthermore, the taper should be no more than 10% of the previous dose, i.e. if you're on 20mgs, then no more than a 2mg reduction at a time, and each reduction should be spaced out at least 4 - 6 weeks to give your body a chance to adjust. If you do find that the symptoms come back at all then immediately revert to the previous higher dose and stay there until all the symptoms have gone.
Print out Dorset Lady's tapering information that she sent you the first time you posted, and take the printout with you to show the rheumy a sensible way forward. If they say they don't have time to read it, then impress upon them that if they are the professional they profess to be then they should be patient focussed, and that means they READ the info you present, LISTEN to what the patient has to say, and ACCEPT that the patient knows their own body better than the rheumy does.
It is a sad situation we find ourselves in, but the current way of the world is that you have to be prepared to shout your case and argue every single point in order to get the treatment you need. So be prepared, both mentally and physically to fight your corner every time you see a medical professional.
Good luck for Monday, and let us all know how it went.
P.S. It sounds like your GP knows very little about the management of PMR, so drop a printout of DorsetLady's information about tapering into the surgery and ask your GP to read it. If they don't agree to follow the guidelines in DL's info then change your GP, ASAP.
Oh dear! It isn't in the least surprising you are in a mess - what a way to manage PMR, or rather, NOT to manage it!
You probably needed to start at 20mg and stay there at least a few weeks until the symptoms were controlled before starting to taper. However - since you are seeing a consultant you might even end up with a different diagnosis so in some ways it is good that you ARE in pain and he can see your symptoms.
PMR is a long-lasting illness, not something you take a course of moderate dose pred and then stop it. You should start at a dose well above the dose you will need longterm to get the inflammation cleared out and the symptoms controlled. Then you slowly taper the dose to find the lowest effective dose - the lowest dose that manages the daily new batch of inflammation as well as the starting dose should have done. Your GO doesn;t appear to have done any of that.
I think you need to take tomorrow as a new start and let the rheumy come to their own conclusion - which may not be PMR but wait and see. Make sure you let them see how much pain you are in and don't try to be brave. And good luck.
As I have just said to piglette it may not have helped me with the way it was cut down. Cutting a full mg in one week not tapering throughout the week down to 15-14-13 such as 15-14-13 Monday, Tuesday, Wednesday, Thursday,15-14 or 14-13 Friday, then Full dose Monday, Tuesday, Wednesday, 15-14 or 14-13 Thursday, Friday and so on... I'm sure has contributed to my fast heart rate, fluttering inside my chest,
PMRpro and piglette have said it all. You definitely shouldn’t be in pain like this so go to the rheumy with an open mind and make it clear to him/her how bad things are. If you do have PMR as diagnosed then it seems you need a higher dose of pred for a while.
others have replied so won’t repeat, but perhaps have another look through the links I sent to your previous post - and agree you need to impress upon the Rheumy your issues.,
Don’t lose hope. I was the same. About 60% improvement on 15mg of prednisolone. GP increased to 20mg which gave me 70% improvement that improved to 90-95% over many weeks. As soon as I got 70% relief my GP wanted me to taper the steroids. We ‘negotiated’ and he agreed to 6 weeks at 20mg which made a HUGE difference. Although not completely symptom free, I then agreed to start tapering 2.5 mg every 4 weeks to 12.5mg. I do get an increase in symptoms about a week after tapering but it settles within 48 hours and is not too bad. I now plan to leave 6 week gaps between tapering and will take it even slower as I get lower.
You might find it helpful to print off the NICE guide for ‘Scenario: Management of polymyalgia rheumatica’ (Feb 2024). I tried copying and pasting the link but for some reason it wouldn’t work 🤔.
Note it states:
“Reduce the dose of prednisolone slowly when symptoms are FULLY controlled”.
It was quoting this to my GP that ‘bought’ me the extra 6 weeks at 20mg. Some of us take longer to react to steroids and of course, as others have already said, it might be that it isn’t PMR. I hope you have better luck with your rheumatologist than your GP 🙏 Keep strong. There is light at the end of the tunnel 🥰
"even slower" - we wouldn't call 2.5mg at a time slow, even if it is what the guidelines suggest, it is often far too fast for many. If it works great - but often it doesn't, especially when the doctors insist you do it from one day to the next without one of our slowed or smoothed tapers.
I have been doing 2.5 mg drops from 20 mg, without issue. I’m aware that once 10 mg is reached things can get a bit trickier. Hence, as I didn’t respond well initially, I decided that once I got to 12.5 mg, I will be doing 1 mg every 4 to 6 weeks or even less. I obviously didn’t make myself clear.
I have learned so much for this group of fellow sufferers. I was soo lucky I got the opportunity of changing Rheumy after a no of years as I felt I was talking to the wall. This person listens and when I have a 'flare up' we discuss the tapering. It is so difficult when you are in so much pain and you feel you are going to go crazy. Stay strong, you will get there.
Poor you. That sounds a bit like the start of my ' journey' with PMR . However with advice from people on this forum I pressured my GP to agree to a 25mg pred dose as the initial start dose of 15mg was barely easing the pain. My GP was very unhappy to agree and wanted me to see a rheumy first. Glad I didn't agree to that as it's a 24 week wait for hospital appt ... Still waiting as started pred early October last year ( I live on the Isle of Wight).The increased start dose really sorted the pain and I've been able to taper to 9mg so far but taking it very slowly from now.
I can't do much as yet in the way of structured exercise but am able to walk the dog, do housework etc so I'm very happy as like you I couldn't do anything initially, even make a cup of tea!
Hope the rheumy appointment gets you on the right path and your physical and mental pain improves.
Hi LunaSkie,You've just described exactly how I was just over 2 years' ago. Totally incapacitated and in agony. I felt suicidal too. I have PMR with Osteoarthritis, Bile Acid Malabsorption ( began same time) and Fibromyalgia. The PMR pain is the worst. Yet look on NHS website and it refers to it as a bit of stiffness of a morning! I wish. However after a long struggle I'm finally down to six and a half Prednisolone, and have a good relationship with my present G.P. and new Rheumatologist (Piglette's advice is sound!). It's taken a lot of forceful pushing on my part to be heard. Something that's hard to do when you're at your weakest physically and mentally. I'm also under mental health services and the counselling they've given me has helped me deal with this debilitating condition. I've recently been referred to an Endocrinologist as there is a problem with my adrenal glands. I've had to taper really, really slowly( many arguments with G.P.! ) and was pressured early like yourself to cut down too quickly. It made the whole coming to terms with condition so harder - kept relapsing big time . Thank goodness for this site who've helped so much. Particularly Piglette whose knowledge I've screenshot and sent to G.P. to back up my assertions. So don't let the bu**ers get you down and I really hope you feel better soon.💪😊
"I've recently been referred to an Endocrinologist as there is a problem with my adrenal glands."
A real problem or one the GP has dreamed up because they don't realise that your adrenal glands are going to still be in hibernation and production of cortisol totally suppressed by a dose of above 6mg pred? They won't start to wake up properly until you are below about 5mg, for some even not then. I know they don't do a lot of endocrinology at med school but this is basic knowledge!
That IS adrenal insufficiency and it is a problem we have to deal with but there isn't anything an endocrinologist can do at this stage - or really, at any stage. The only thing that will make your adrenals start to produce cortisol again is a slow reduction in the dose of pred until the HPA axis gets the message that it needs to wake up again and do the job it is designed to do. Your body has to adjust to that, so the changes in dose need to be small and at longer intervals than many GPs realise. If you can't cope with the approach we support, there are only 2 options really: switch to hydrocortisone in the hope it will provide more encouragement to the HPA axis or remain on pred. The trouble is, HC isn't strong enough an antiinflammatory to manage PMR that is still active, even at a low level. So PMR continues to call the shots - even when it isn't the only problem.
So the question is what was the lowest dose that you felt OK at and how did you taper beyond that? It was probably too big steps and/or too often.
This is the lowest I've gone - six and a half. Been 3 days. So far, so good. Got down to 7 last January then caught COVID. Went up to 25mg on G.P's advice and slowly tapered to 7mg . Bereavement in September. PMR flare. Back up to 8 and just began to feel better in December, told to drop to 7 which I did. Weeks of exhaustion. Told to swap to Hydrocortisone over Xmas. I didn't after advice on here. Now at the six and half.
It is far too soon to get in a tizwas about the adrenals. All you can do is taper VERY slowly and see where you get. The fatigue is a hurdle that you don't so much spring through, far more a crawl over with a lot of hiccups and stumbles. And you may have to go into hibernation to get the adrenals out of hibernation - SnazzyD really struggled as her posts often recount.
A study was done in Leeds which included PMR patients who were having difficulty because of apaprent adrenal issues. And they discovered that function will often return when you go about it VERY slowly - but almost always with these patients it took much much longer than was expected. Not weeks which some expect, often not months but years, It sounds depressing but it is just part of the journey and it is a balancing act at this stage because the PMR - which the same doctors possibly said only lasts 2 years and then it will all be done and dusted - also has a say and needs enough pred to keep it quiet.
Absolutely was told the 2 years! Pushed and pushed from the onset to cut down quickly. Made it all so much worse in every way. At the risk of gushing - I really don't know what I'd have done without the information and advice here. Thank you so much and have a lovely Sunday🕊️
Has been good so far - weather utterly disgusting but the local lad has just won the Australian Open Tennis!! There will be some sore heads up the valley later!
Oh my god, you are not being treated correctly. Some of us had to go up to 30 mg and stay there a bit to get rid of the pain. I ended up doing the "upping" on my own and then telling the dr. after it worked, so I had "proof". You need to do a trial of say 20 mg, then if that doesn't work, 25 mg..and as I have seemed to notice, it can even take 30 mg for some of us. As an example, I am just now able to taper to 13 mg (again), after almost two years! We are all different, and I have a personal theory from my readings on here, that the younger one is with PMR (50's), the more Pred it takes.
Regardless, you need to dump that Dr...remember it is NOT them in the massive pain and they'd do the same if it were them not being able to function. Unfortunately, you need to really be your own advocate, especially with this condition.
Please read around this site, you will see what I am talking about
And be prepared to beg and/or cry to let them SEE how bad off you are, or they won't buy that anyone who can walk in can be in this much pain. Sad, but true.
Sounds like me during my 6 year misdiagnosis, both GPs and first rheumo. I was being put on stronger and stronger painkillers ending in morphine patches. Osteopath cost me an enormous amount of money but he did help somewhat. Then a new GP arrived 9 years ago who said that nobody should suffer like that. Thanks to her, I saw a new rheumo, who was convinced I had cancer. An eventual PET/CT gave the diagnosis and what was PMR had added its nasty brother, GCA, to me. When I got put on high dose steroids, the pain had gone in 4 days and I went through cleaning the house like a demon. I have been with an excellent rheumo now, for 2.5 years, who has got it all under control. DON'T BE ME! Don't let them fob you off.
Five years for me. I didn't get the painkillers - told them clearly enough they didn't work! I had an amazing Bowen therapist and an osteopath who dealt with the worst muscle spasm didn;t spend a fortune but it was more than enough. I worked out what it was - GP still wouldn't try pred but referred me. Rheumy wasn't convinced but did at least give a 6 week course of pred to see if it helped for a trip to the USA. It did - in 6 hours! But he still wanted it to be an inflammatory arthritis because he wouldn't listen to my side.
I was also diagnosed in October - it’s such a horrible experience. Hopefully the rheumatologist will sort out your dosing (I’m currently at 14mg too but seem to be managing on that). All the best to you x
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Not sure if it is PMR now
Help please
Should I decrease my dose ? 
