Hello, This is my first post but i have been an avid reader every day and have learned so much.
I was diagnosed having PMR in September 2023 by my GP who recommended I take 15 mg of Prednisolone daily to see if his diagnosis was correct. To my surprise and amazement, I became pain free which was a miracle. In the past 8 months leading up to my diagnosis, I had sadly lost my mother, stepdad, mother, and father-in-law and supported my 3 adult kids through losing their Dad. A traumatic year so I could understand that this level of stress and trauma could be the underlying reason for this awful condition to take hold. The truth is I have been in pain for many years and ignored me as always. I am disappointed and angry with myself for not checking in about my health concerns, but also disappointed that this PMR diagnosis has taken over my life.
Since tapering I got to 10mg as planned (By my GP). I had some pain return at 12.5mg and then at 10mg, I became close to where I had started before the steroids. My G.P. advised me to increase by 1mg for 10 days, and if no improvement increase by another 1mg which I did so currently taking 12mg. I am still in a lot of pain, especially in my right arm and shoulder. My GP also explained that if this doesn’t work he will refer me to a Rheumatologist and would not recommend any further increases in case he has misdiagnosed me. Not helpful and considering the amazing impact the initial 15mg had I don’t know why he would think this.
I read a lot of posts and get the general feeling that other PMR sufferers are taking personal control of titrating their steroid dose to their pain levels. I have a strong feeling that a reset to 15mg would be the best option for me but worried that my GP will not recommend or support this decision. I would hate to lose his interest in me and my journey, however, I want to be assertive as I cannot work or do much due to pain and exhaustion so surely self-care is the answer?? Can anyone give me advice on what is my best option, please?
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Cooper02
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I think you probably need a reset to 20mg and then taper once everything is under control. 15mg is the bottom end of the starting dose range and some people need more to clear out all the accumulated inflammation at the start - especially if they have actually had it for a while. Only once it is well springcleaned can you taper without a small amount of inflammation filling the bucket of inflamamtion and it overflowing. And once you flare - creeping up slowly rarely works - you are always playing catch-up. When some symptoms reappeared at 12,5mg that was a sign you needed longer at 15mg - or probably a shorter time at a higher dose.
This is the 2015 Recommendation s which say the lowest effective dose in the range 12.5 to 25mg. Many patients need more than 15mg and/or longer at that starting dose
Get your GP to have a read if you can. He has to learn that not all people at sorted at 15mg and you have had a very rough year - your immune system is feeling it. have you had bereavement counselling? It made a massive difference for me but the biggest surprise was a massive flare about 6 months after my husband died and apparently the stress was reducing, It lies in wait for you - and it may take a good dollop of pred to sort it.
Thank you for your reply and thank you for the information.
15mg was such a significant change for me and i never realised that the level of chronic pain i have been experiencing could have been for any another reason other than getting older, so to be pain free was amazing. This is why i want to try that again but i take on board that 20mg may have more of an impact as a starting dose.
My G.P has suggested many times that antidepressants are the answer as that will help my stress levels and mental well-being therefore improve my physical health but i am not convinced and not sure i want any additional side effects other then the steroids. I am having counseling which has been helpful.
All i want to do now is be pain free, be in control of my condition and try and get back to work, but i also appreciate in everything i read here this is a tough journey!!
Good morning I had your experience with being told I needed to take antidepressants as things were age related and maybe fibromyalgia. I am not convinced about that one. They did help a lot with stress levels but not with pain issues. I am convinced I had the start of PMR and by not being treated I developed GCA. I now take a higher dose of Amytriptaline and it has been great for stress levels. However I just wanted to say dont let them brush you off with not treating your pain issues properly. I wish I had know this a few years ago.
Good luck to him if he can manage PMR better with antidepressants! He is also out of date - counselling and proper management of your health issues are far preferable as a start. Low mood is part of PMR - not least because of the constant pain. Once diagnosed and managed that pain should improve markedly but the adaptation to living with a chronic illness is also a problem - and far better solved by understanding your illness, how to best manage it and, if necessary, counselling on the loss of your previous lifestyle. Like pred, antidepressants cure nothing, but using pred properly may well avoid the need for even more pills. You can't be in control of the condition, PMR does what it wants, but you are in control of living with it well. A return to work will depend to some extent what your job is and how helpful your employer can be in facilitating your return and adapting how some things are done - but some people do manage, Most of us are retirement age which helps but there are increasing numbers who work because of the rising pension age and what appears to be younger people being diagnosed with PMR.
I left my job in care home management as last year was to overwhelming and stressful. I have re-evaluated and now looking at different choices and at the same time trying to avoid future stress. Unfortunately long term i need to work. i believe there is no financial support when living with PMR. When you commented about 'adapting to living with a chronic illness', i can see that this reality in itself makes me more cautious about a future work commitment.
I will see my doctor tomorrow and insist about the increase and take with me the documents you sent me and information about dealing with a flare.
Are you in the UK? Put up a post about possible benefits - there are a couple of people on here with experience in the field - because there may be something - my granddaughter has received PIP or whatever it is called now because working with her considerable health problems was problematic. I don't live in the UK so am totally out of touch there.
Obviously having money to live on is crucial - but there is more than one way to skin a cat! Do hope you can find a solution.
You might be interested in some of the later replies in this thread - that link should take you to them. It has made me realise we need a discussion about this aspect of life with PMR - we have increasing numbers of people who are forced out of their employment and there must be something to help adjust. when you aren't in a position to retire and/or are financially secure.
I was told the same before being diagnosed, that I was stresed and depressed and just needed to exercise more. I said that wasn't true. 10 months and 6 visits to get diagnosed. I don't know if its' unconscious bias or gaslighting, but it's sadly too prevalent amongst GPs
I am now beginning to understand that maybe my doctor has not got the confidence or knowledge to commit to treating my PMR. Seeing him tomorrow and will question him about this and see how he responds. I actually feel for him if this is the case.
It is a fairly rare disease and not all GPs are experienced in treating it so just go by what general guidelines they have. I'd ask for a referral to a rheumatolgoist given your relatively young age to get it. There's no harm is saying you've been in touch with the PMRGCAus charity because it is all so confusing. It's always better to try and work with GPs and educate them I've found, get them on your side. BTW sending a hug, souds like you've had a horrendous time. This forum is great, keep us posted x
How did you reduce from 15mg to 10mg? That may have been too quick -even though in line with GP and guidelines]
Increasing by only 1mg a time rarely works if you are flaring you need to follow the advice in this link - do you have enough tablets to do that? Any chance of running it past GP?
Agree, that as you had such a good response initially it seems strange he is now querying his diagnosis. Not sure you need a rheumatologist- just a GP with a bit more conviction in his original thoughts.
Sorry to hear of all the stress you have had, and agree with PMRpro - you may need more than 15mg…
I was on 15mg for 3 weeks then reduced to 12.5 for 3 weeks. I then reduced to 10mg and stayed on that dose for 6 weeks before going back to the G.P due to the pain and my fear of reducing further. I had also had a blood test which showed my inflammatory markers had increased. My G.P appears to be more concerned about the part he plays in my steroid use and his goal to get me off them. I have another blood test arranged for next week which he requested. I could get in touch with him but not sure his response will change and he may say wait for the bloods or i could increase to the 15mg and just tell him i needed to do it to deal with my pain. Then if the 15mg doesn't work he may agree to a higher dose at that stage. I am just worried he is not confident in my treatment regime.
The reduction he gave you is in line with guidelines.. but it certainly isn’t achievable for everyone - we know that from others experiences. And if your inflammation markers have increased as well as a return of symptoms then that is proof you require an increase in Pred.
If you have enough Pred then I’d be inclined to follow advice for flares- and then discuss with him when you have the result of that…unfortunately we sometimes have to take action ourselves. He may not like it, but you cannot suffer because he is dithering, Is there another GP in surgery who may be more knowledgeable you could consult?
Thank you. I will see him tomorrow and take the documentation on how to manage a flare and insist i at least go up to 15mg. I will also take the documentation PMRpro sent me.
I have bloods again next week so at least he can review again after that and if not pain free i will request 20mg.
I can only but try but i will be more assertive tomorrow and be very clear that i am listening to experts for advice which i am happy to share with him
Hopefully he will listen - and not be dismissive of the advice given on here as some are. We are bona fide patients who do know what we are talking about, and many [not me] are medically trained..
I increased my steroids by 5mg due to a flare, and then informed my GP, who reluctantly agreed with my approach. It's your body and you know it better than your GP, the information and lovely people on here will allow you to take control of your disease and manage it, and you will have a lot more knowledge of pmr than your GP. Good luck with your journey.
I am seeing my GP tomorrow and hope I have the same outcome as you. I am learning and already feeling a new confidence now I have introduced myself to you all on here.
You used to get at least a month at each of the starting dose - and it makes a big difference. If GPs are going to make a diagnosis of PMR, it also behooves them to know how pred should be used - and it is to achieve AND maintain remission of the symptoms. They can't diagnose PMR and then go hell for leather to get the patients off pred when the symptoms return. That isn't the sign of an incorrect diagnosis - it is the nature of the disease process. PMR is a chronic condition and in the UK pred is the only available management strategy at present - like it or lump it.
Sorry to hear that you are in pain once more. Like you, for me 15mg was a 'miracle'; pain and stiffness were gone and I felt that I could live my life again. But my GP was more 'daring' and agreed to let me control the reduction.
So I stayed on 15mg for 4 weeks before using a very slow taper (DSNS) to 12.5mg. I then stayed there for another 4 weeks before DSNS down to 10mg. Then, if I felt ok (and only if I felt ok - no return of symptoms, fatigue, stress, etc) I tapered the dose again but never more than 10% reduction. It took me nearly 3 years to get to zero but I did, and with no flares.
I would speak to your GP, show them this forum, the papers that PMRPro has highlighted, testimonies from other people and see if you can 'start again' at 15 or even 20mg then take it more slowly. I was referred to a Rheumy by my GP but the reply came back 'textbook case, responding to treatment, no need to see him'. And with the current strikes and waiting lists, you might be better off taking control of your GP rather than risking having to wait for a hospital appointment.
Very sorry to read of all your issues with pmr. From my experience, I certainly agree about the advice given to you already. One of the frequently mentioned bits of advice with regard to tapering, or as you say, titrating, is not to reduce by more than 10% of a current dose. Therefore at 15mg, the reduction would be to 13.5mg. That was the path I chose, but I had acquired a pill cutter, and one mg pills so I could easily follow this route. Also, I never reduced if I was still aware of pain.
As DL has said, not everyone can manage the reductions in the guide lines, so it is really important to listen to your body! I think most of us with pmr realise early on that pmr has a mind of its own, and cannot be forced into remission until it’s ready, and, in some cases that can takes years.
At my diagnosis, I was told pmr could last two years, maybe longer, and it may be chronic! At least I am now on zero pred, but it did take longer than two years!
I wish you good luck, and hope you manage to get the pain under control.
Thank you charlieboy. I am happy that you are on zero pred now.
My GP also told me this is only for up to 2 years, he was confident it would be less. I believed at the time he knew his stuff. I now understand that this was maybe far-fetched considering my start on this journey, however being pain-free is the main goal at the moment so i welcome the steroids. ( I never thought i would be saying this as in the beginning i was reluctant to start the treatment)
You’ve got some good replies here. I had a battle with reducing Pred with my rheumatologists who wanted me down far too fast for what I felt was right for me. I just said I would keep reducing but at my speed and surely they would agree that a successful, slow reduction is better than going back up with relapses. I also said, quality of life was mine to have and essential to my mental and physical health. I usually left the room close to tears with the stress of the standoff but feeling I was in control.
Regards your GP, I would ask if they think it is right that you should be left in a decrepit state for an unspecified amount of time (could take ages for a rheumatologist) when there is a treatment that keeps you mobile. Would they want that themselves? I know this sounds very combative at a vulnerable time but many of us have been forced into this position with these conditions. It may not even come to it, hopefully.
Exactly what I'm experiencing with my rheumy right now. Also, she's written an "in caps" must reduce Pred immediately, to my new GP. The GP seems afraid of her. I told the GP that I am/will reduce, but for sure not by 5 mg. overnight and not by 2.5 weekly. Then they both threw shade at the neurologist who originally diagnosed PMR 2 years ago. Trying to avoid stress with this rheumy is impossible. Always a standoff.
I also said to one to feel free to record in my notes something like, the patient is making progress with their own plan, if they were afraid of professional criticism.
Well I was on the GP plan which had been increased for a flare. Then I talked with the rheumy on Wednesday, who was aghast that I was up to 20 mg. She wrote a not so nice email to my GP. The GP's plan was fairly reasonable, but the rheumy new schedule is reduce by 5.0 immediately then 2.5 weekly til down to10. Then reduce by 1.0 per month. She wants me off the Pred as "all my problems are being caused by the Prednisone" and "don't think your PMR is even active'.' Last phone appt. 3 months ago she said she would be happy with a maintenance dose of 2.5. She's a lost cause really. 🙄
hi Cooper02! Welcome to your first post.You will hear it over and over, listen to your own body and gut feelings about life. Rant if you want to, we are all here to listen to you, whilst the medics really consider us to be some situation on a computer. You will get all the sound advice here.
I was in a very similar situation with wanting/needing to up my dose and worrying about what the Dr. would say (then you get to a point where you don't really give a hoot what they think), but I did it anyway out of desperation and then and made big point of how much better I felt on it (and that I was "desperate for relief", that I couldn't function if I didn't get better, was going broke not working, etc)..and to my surprise he wasn't "mad" and even told me to stay at 30 mg for a month. I got my validation when my ESR actually went UP on 30 mg..I guess my point is, maybe just try it and then report the hopefully great results to him?
i am seeing my GP tomorrow so will be assertive. I too want to be well enough be able to work. Apart from the financial hit, i believe my mood is lower due to being at home without a purpose and my job has always given me that. I will also use that to influence him tomorrow
I agree that there is no one-size-fits-all approach to getting off the Prednisone. I was diagnosed in July 2023 and have been on 15 mg of Prednisone ever since -- closing in on six months now. Only very recently have I been able to get down to 14 mg after several failed attempts at tapering. Going down by more than 1 mg at a time was impossible for me -- the pain just returned within a week. I see my doctor in a couple of weeks and will see what he says. He was expecting me to be down to 10 mg by now, and has been reluctant to renew my prescription to the prednisone. I know being on prednisone for so long isn't good for our overall health, but if there is no other alternative, then I don't know what the answer is.
And he would be seriously negligent to refuse to renew the prescription now. Probably if he'd put you on 20mg originally, he'd now be thinking you had done well to get to 14mg!
That is awful that your GP is reluctant to renew your prescription. Surely he will risk you not having what your body is already dependent on and increase the risk to your health.
I am sorry you are having to worry that this could happen. I hope when you see him he will understand and support you going forward
It seems most doctors are far more concerned about the side effects of the prednisone than about getting the symptoms of PMR under control so that patients have less pain and more quality of life. It's just very unfortunate that prednisone is really the only effective treatment for this disease, because we are stuck with choosing between two evils -- living with PMR pain and disability, and the possibility of developing GCA, or risking other serious health problems from long-term prednisone use.
I was lucky in a way that my PMR was diagnosed during lockdown and my prescription just stayed the same whatever I was doing with the tablets. I was also left to self-manage but also rapidly realised that I knew more about PMR than the stream of GPs I saw (and that was before I found this forum) and I reduced to 4mg from 15mg fairly well by feeling OK, reducing by 1mg, feeling a bit rubbish for a week to two weeks and then levelling out again before the next drop - maybe 4-6 weeks later depending on whether I felt ready or not. This seemed OK till I got Covid and all went haywire. The Covid wasn't bad but the aftermath was dreadful. I didn't know about Sick Day Rules, or Adrenal Insufficiency but I did instinctively go back up to 10mg. My knee joint was extremely painful (turns out I acquired an insufficiency fracture inside the end of the femur) and it took me ages to settle down. I am only now (more than 18 months later) getting back to 4mg. My mobility is still rubbish but I manage to do quite a lot still (I can cycle but not walk far). My main message is to listen tot he advice of the experts on here and arm yourself with knowledge and self-judgement. Even from a good rheumatologist i don't think you will get much help. Treat this condition with utmost respect and don't get bewitched by the 15mg feeling - I too felt great on 15mg and sometimes lust after that feeling, a bit like remembering the first flush of love but realising you can no longer go there. Or at least you might, but you can't stay there forever. Maybe getting slightly carried away as it is the witching hour but the message is sound. I do know people though, that have had PMR and totally recovered so it is possible. Try and keep up a modified exercise regime if you can. I am finding that hard.
Good luck and keep coming back! Information is key.
So sorry to hear that getting Covid threw you out so badly! It seems the Covid virus and vaccines have a significant role to play in the development and exacerbation of PMR.
I also feel I know far more about PMR than my doctor does. Since being diagnosed, I've done a ton of research and joined forums like this one to learn more. I believe doctors only know what the medical textbooks tell them, and nothing more, so if you don't fit into that pigeon hole, they can't help you much. I intend to tell my doctor on the 23rd that tapering by more than 1 mg at a time is impossible for me, and that I'm going to have to keep taking the prednisone and wean myself off it extremely slowly. In the meantime, I'm doing what I can to help dampen the PMR inflammation -- and minimize the potential side effects of the prednisone -- by taking a bone strengthening medication, plus calcium, vitamin D and MSM, cutting way back on my salt and sugar intake, and exercising and meditating every day.
I agree with you that we need to listen to our bodies and take a proactive approach to our own care and recovery.
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