Hi, I am 58 yrs old and was diagnosed with PMR in Dec 2020. I have always been very active and continue to play tennis, cycle, attend the gym and play golf. I started on 25mgs Pred and have managed to taper it down to 6mgs/7mgs, but as soon as I go below that my symptoms of stiffness return. This has now happened on three occasions. It has been suggested to me that I am pushing my body too hard hence why I cannot reduce any further. Has anyone else managed to maintain an active life and reduce to zero or am I not being realistic??
PMR and sport?: Hi, I am 58 yrs old and was... - PMRGCAuk
PMR and sport?
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Achyjoints
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DorsetLadyPMRGCAuk volunteer
You will be able to get to zero one day, but not at the moment…as you are flaring repeatedly at the same dose, your body & illness is telling you that 6/7mg is what is required just now.
Whether that is because
a. you are trying to go too low for illness,
b. whether you are too active for dose,
c. whether your adrenals are struggling, or
d. a combination of three is hard to tell….
but I would think d. is favourite.
You have to remember you are not reducing relentlessly to zero, you are trying to find the lowest dose that give you the same relief as initial dose did. Overshoot it and you have problems. Plus around this level your adrenals have to start thinking about starting to work again,
I would suggest maybe you ease up a little on your activities and see if that helps, give it another month if so and maybe reduce by only 0.5mg a time and also consider using a slower tapering regime - have a look here - will help tge adrenals as well -
healthunlocked.com/pmrgcauk...
But what tapering method you use, if you go below the level required you will flare…a little more patience maybe. 😊
At 18months or so into your PMR, to be at 6/7mg is not bad….many would be happy with that.
Thanks very much Dorset Lady, I wish the pharmacist linked to my Doctors surgery read this site as she is under the impression reducing meds down to zero is a straightforward process of going down 1mg per month and she can't understand why I still ask for 5mg tablets. I realise that I need to reduce by 0.5 instead of 1mg in future and adapt my activities
Unfortunately she isn’t the only one that has no understanding of PMR….and some if the guidelines don’t help either! We aren’t all perfect patients some of the medical professionals would like us to be. Just a few small changes here and there will get you through 😊
I got to 7mg after 12 months but it took another 3½ years to get to zero. That was only a few weeks ago so I'm fingers crossed PMR is in remission. The most important things I learnt from our gurus on this site is patience and reduce gently and slowly. Good luck.
Hi Achyjoints, I was diagnosed in June 2020 and am down to 4mg and feel that a) I'm very lucky and doing really well and b) have been doing nothing like your amount of activity. I suspect that your body is telling you that enough is enough and that you need need to ease off quite a lot. 7mg may be the limit you need to keep the inflammation under control for the time being, but even that may well only work if you give your body time to acclimatise and then think about tapering in .5mg every month/five/six/longer weeks. Pushing it further may mean going up to higher levels and then take even longer to taper further. You/me/we have a long term systemic disease and without a change in lifestyle then the disease will win, whether it be the stiffness, pain or adrenal function not kicking in. Acceptance, patience and moderation is the key.
Thanks for your response, yes I'm slowly coming to terms that I'm going to have to change my lifestyle, albeit reluctantly
I’d vote for d) in DorsetLady’s post. It would be better to rein in expectations and be able to continue to reduce than have to keep going back up in dose because you don’t want to compromise. Bear in mind you still need recovery time when Pred finishes so it isn’t a case of getting off it and back to normal. I’d also do steps of 0.5mg if you are struggling, there is no point in rushing this bit. Do read her link too about adrenals, really important.
Thanks for your response SnazzyD, I've only just signed up to this website and have come to realise I was in blissful ignorance about my condition and was merrily going along thinking, 18 months and I'll be back to normal, yes it's rethink time!!
As mentioned by SnazzyD / more in FAQs as well - healthunlocked.com/pmrgcauk...
Dear DorsetLady, I've just read your attachment which was very informative but unless I missed something it doesn't seem to explain why our bodies stop producing cortisol and hence why we have to start taking pred to counter the shortfall or is that still unknown?I've also got another question as you clearly seem to know your stuff,
I've seen an NHS Rheumatologist who suggested that if I keep having flare ups whilst trying to reduce, that she would put me on methotrexate, but reading numerous cases on this site it appears that lots of people are on pred for years, so I'm wondering what the possible benefits would be?
We stop producing cortisol because the pred is supplying it. The body only produces what it perceives is needed. I've been on pred since mid-June 2015 and in December this year, as I recovered from a serious flare which had gone on for months, I had what they call a morning cortisol test. I went without any pred for nearly 60 hours, and the test result was that my cortisol level was right in the middle of the normal range. At the time I'd been taking 5 mg for a while and I did not expect such a good result, but had been around 1.5-2.5 for several years before the flare. I did take more than 5 for days at a time on several occasions through 2021. I have never taken any medication other than pred, despite the long time, but that may not have come up because I was below 5 mg for nearly all that time. Really anything below 7 and your own adrenal production will begin to return.
Good question….why do our bodies stop producing cortisol in the first place ?I think the answer is still unknown but I stand to be corrected.
I thought that PMR pain is caused by an excess of cortisol produced by the immune system
It’s not as you state, it’s the other way around -the adrenals stop working because the Pred has overridden the natural amount of cortisol your body produces -so they don’t need to work.
Quote-
WHAT HAPPENS WHEN YOU ARE ON STEROIDS?
The body normally makes about 30mg of cortisol per day although that is not necessarily a constant level, measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.
Once you have been on steroids for more than 2-3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to the normal cortisol production by your Adrenals [does vary between 5-10mg for individuals] known as the physiological level they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.
That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena! Even on higher doses of Pred where perhaps you would not expect to feel fatigued or stressed you do, and that’s because you don’t get that extra “oomph.”
As for MTX -I would resist that initially, try our suggestions first and see if you can reduce. If not, then you may need to consider it , but for many it’s not necessary.
I understand that but if Pred=cortisol ( i.e takes over production ) then why does your body not produce enough cortisol to deal with the initial PMR symptoms. Is that the unknown or am I being really dim 🤦♀️
That's just not the way it works - the body requires cortisol for certain processes, and it is strictly regulated in feedback loops to keep it at the right level - too much is bad for the body and causes adverse effects, the same as high doses of pred often cause.
PMRpro has replied .and as stated it produces extra temporarily in extreme conditions “the flight or fight” scenario -if it did it for PMR on a continual daily basis it would probably cause more harm than good!
Right, that makes sense
Think about it as being a bit like your central heating boiler and having a wood-burning stove in the room where the thermostat is. As long as the woodstove is producing enough heat the thermostat signals to the boiler that it needn't heat the radiators too. As the woodstove burns down and the room cools - the thermostat triggers the central heating contribution. The central heating is the adrenal gland, the woodstove the oral dose of pred.
The body needs a certain level of corticosteroid to function properly but it doesn't care whether it is provided by the adrenal gland in its natural form as cortisol or a synthetic version from outside as pred. But it does know that that it shouldn't have too much or it causes problems. As long as there is enough pred present - no cortisol is produced but as the dose of pred falls below the amount the body needs, about 7-8mg, the adrenal glands have to wake up and provide a top up.
Your body doesn't stop producing cortisol UNTILthey have been on a high enough dose of pred for long enough - it has nothing to do with PMR developing in the vast majority of cases. PMR isn't the disease - it is the name given to a set of symptoms due to an underlying disorder, and there are several so at the start a differential diagnosis is essential.
Pred is one of the most powerful antiinflammatories available - it is the equivalent of ibuprofen or aspirin but it works in PMR, the NSAIDs don't.
One question which has plagued me is: cortisol, we are told, is the stress hormone. So why, when stress is a major trigger/final straw for PMR onset, does artificial cortisol help us?
Because it has such a strong antiinflammatory effect, pred more so than hydrocortisone which is identical in structure to cortisol. HC is rarely as good at managing the inflammation
I think that could be said of most of us!
I have maintained my pre PMR lifestyle but have only managed to get down to 9mg a day after 6 years. I think that in my case (I have tried to get lower but stiffness was too much) that is the dose I need and I continue to try a very slow taper every 3 months and hopefully one time it will work. If your circumstances happened to me I would put it down to too much inflammation for the pred. to deal with rather than pushing myself too hard. I am envious that you have got to that low a dose after 18 months! I would suggest trying a very slow taper of half mg every 3 months and hope one time it works. Reducing to zero is the ultimate aim but only if the PMR allows. Quality of life v. reduced dose. Quality of life wins every time for me.
Thanks for your response scrambledegg, I'm not a stupid person but considering I've got a pretty serious autoimmune condition, just looked on it as more of an inconvenience. Literally in the last 48hrs I've come to realise how different every person deals with this condition and GP's guidelines are almost a waste of time. Time to reassess my activities!!
I cannot tell you how many times I've read here (and contributed my share) the statement: "We are all different". This is one, perhaps the main, reason why so many doctors have trouble actually managing our condition effectively and with any luck leave us to manage our own taper. What works for one patient is often the exact opposite of what another needs, and it is difficult for a medical practitioner who is used to dealing with diseases which are less idiosyncratic.
True, but it would help if they actually listened to their patients though..,
I had a telephone conversation (well not so much a conversation as a lecture) with a new keen young GP this week on another subject.
He wanted me to go back on statins- when it says in records I’m intolerant to them.
He said what have you tried -so I reeled off all the ones I’d tried -to be told well they’re not in our records. I politely (or not) told him I had been treated by other surgeries prior to joining the current one! Happens when you’ve been around as long as I have!
Shan’t be talking to him again….😳
Shaking head. I guess eventually (one hopes) the young ones begin to recognise that the patient with a chronic condition is the real expert on the illness, and their job is to support and help the patient, not order them around!
Hi Dad2Cue, I got diagnosed in A&E following the results of my bloods and inflammation markers + xrays.I guess naming myself achy joints wasn't totally accurate as last Sunday I essentially seized up in my neck, shoulders, and legs and was just incredibly stiff, even my thumb joint started throbbing, but I'm pretty sure I have got PMR
When the first doctor I saw re pain before the PMR diagnosis asked me where I hurt I said everywhere, and her response was that I needed to be more specific. She was not the person who made the diagnosis. Next doctor basically took one look at me, saw how I walked, heard my symptoms, was sure I had PMR, and sent me off to have all the bloodwork and more done again. If asked to describe the pain at that time I thought it felt like the pain you get from exercising too much, only it never went away, and got cripplingly bad after some months. I never felt it was in my joints, although for a long time I did think it was OA getting worse and wondered why my joints didn't seem affected.
I personally found it was much easier to taper if I went in half mg steps once I got below 10 mg. That, and using a dead slow taper, saw me have a pretty painless taper to about 3 by the end of the first year - and 1.5 by the end of the second, just to put things into perspective!
‘The lower, the slower’ this is so true, exactly what I’ve found, from 6mgm & lower, you’ll notice every slight reduction & risk a flare if too fast. You’re now entering the territory of adrenal insufficiency which brings a new set of symptoms. It would be checking this out in faq’s. Going slowly go Ives your body a chance to catch up, helped by easing up on exercise.
Thanks 123mossie just grasping this point and hating the thought of slowing down for the 1st time in my life
Hello! I was diagnosed in Sep 2018 and have tapered very slowly to 2.5mg. Im a very active person, and I have had no problem keeping this up - hiking at least 25 miles a week and swimming at least twice a week. I think everyone is different, and as others have said, only you will know what feels right for you. I have some stiffness first thing in the morning, but I take my Pred and get moving, and then I dont notice it. I retired in January, and im now even more active, im hoping to taper even further, but im taking it slowly, 0.5mg at a time. Good luck!
Thanks for your input, it certainly gives me hope!!
I have kept very active throughout….I’m not a super athlete, but tennis twice a week and gym twice a week. I think I have only felt pain or extreme fatigue when I have gone too low on dosage, or when my adrenals were lazy. I am now down to 2.5mg and feel my adrenals are again up to speed. You may not need to cut back on activity. But I suggest you try that first to see if it makes a big difference. If it doesn’t, then I think you need to assume you have reached lowest dose possible for you….at the moment.
That IS super athletic. I’m happy if I can climb one flight of stairs - and that is after 10 years of PMR!!
I know I’ve been luckier than some Constance!
Enjoy life as long as you can. None of my illnesses will kill me - except my kidneys if I don’t look after myself I suppose.I do what I can, when I can. 👩🦽👩🦯🦵
It is my intention to do exactly as you say Constance! I read all your posts, and love your attitude. All the best!
Thanks Mary for your input, I'm beginning to realise how ignorant I've been about managing my condition
It’s a huge learning curve this. And that is why this forum is so helpful, both with information and experience, but also for us all to see how differently we all manage, and how our individual responses to the challenges we are faced with vary so much.
I was able to maintain a fairly high level of activity whilst reducing from 15mg to zero over 3 years. That included daily gym sessions, a weekly pilates class and competitive squash (p'raps an oxymoron) 3 or 4 times a week. The trick was to listen to your body, and back off whenever necessary. After 6 months at zero I contracted Covid and, whilst fully recovered, that seems to have triggered a relapse. so it's back to a low dose for a while. I'm still able to exercise though.
Yes I've come to realise that it's all about listening to your body and not about being obsessed with reducing my steroid intake. Thanks
Hi Achyjoints,I know exactly how you feel but there is no quick fix I'm sorry to say.
I was very active in sport Rugby and Triathlon and when I developed PMR I was 54 yrs young and only just managed to come off of prednisolone around 18mth ago and pleased to say holding my own at present, but it is a long journey.
Thanks for your response, I think it's easy to become paranoid about coming off pred ASAP when everything tells you how harmful they can be in the long term
I was on steroids for 4 and half years for GCA -starting at 80mg -and probably took more in first few months that you’ve taken to date. … and despite the warnings, 5 years into remission I’m still walking, talking and compos mentis -with no more issues than I had before taking them.
Steroids get a bad rap, but a lot if it is in the doctors’ mind -and they transfer that to the patient. They are no worse than a lot of other medication.
Hi, I turn 80 next month and have had PMR for over 10 years, I am still fit and active, walking, cycling, Martial Arts teaching. I have tried tapering off prednisolone many times but I find that a maintenance dose of 5mg works for me.Hope this helps.
You are officially my role model Alan, thanks for your input
You are very welcome.
Hi I am 70 and was diagnosed 18 months ago with PMR I refused steroids other than 2 injections since I also have epilepsy. So I ache all the time....I am very active with ballroom and Latin dancing and walking and the exercise keeps me fit and helps the stiffness and aching ....If you can keep it up I don't believe it makes it worse ....tho on steriods it may be difficult.....lots luck
It very much depends on how badly you are affected and how badly your movement is restricted. I skied with PMR but not at the level I had previously - I couldn't have danced, I could barely manage switching to aerobic classes for the elderly and I was in my 50s and had been at the gym almost daily previously. When I finally got to try pred after 5 years of PMR without pred I was at the stage of having to crawl up stairs on hands and knees and stomped down like a toddler, always fearful of falling. I've just had a flare/relapse and eventually had to admit I needed more pred (meaning an increase from 17 to 20mg) - walking downstairs was scary because my legs just wouldn't function,
PMRproAmbassador
You seem to have arrived at your destination - 6mg or so is what you need to manage the ongoing inflammation being caused by the autoimmune (a/i) disorder underlying PMR. This isn't an illness that happens, you treat it with pred and it is gone away, all you have to do is get off pred. It is a chronic condition, like rheumatoid arthritis or lupus, and the pred has cured nothing, it is a management strategy to use to allow a better quality of life until the underlying disorder burns out and goes into remission.
Your body will tell you how much exercise it will tolerate and it MAY mean you need a tiny bit more pred to allow you to do it - but believe me, if the a/i part of PMR is still chugging along in the background, then even if you sit at home and do nothing, if you aren't on enough pred, the inflammation is still there and will build up until you have symptoms and on the meantime, you lose muscle condition and fitness.
It also doesn't matter how slowly or small steps you taper down with - you won't get below that aimed for "lowest effective dose". The reason the pharmacist doesn't understand is that they are not a doctor and don't understand the disease process - mind you, plenty of doctors who don't understand it either! Reducing pred that has been used to manage a flare of something like RA or asthma is one thing - it was there to bridge a gap between the acute situation and the other medication being adjusted, in the case of RA the DMARDs, usually methotrexate or leflunomide, or introducing a biologic, to keep the patient more comfortable in the meantime until the effect kicks in. But in PMR, at the present pred is your equivalent of a DMARD and there is no other option, Ask them if they would tell their RA patients to reduce their DMARD and not expect a return of symptoms.
A dripping tap eventually fills a bucket sooner or later. Pred is the mop for the puddle created by the overflowing inflammation - they haven't found a replacement washer for the faulty tap yet ...
Thanks very much for your lengthy response PMRpro, I only joined 'Health Unlocked' 2 days ago and since posting my question have learned so much from all the numerous responses, which means I was living in blissful ignorance
Why we are here 
Hi Achyjoints.
I was interested in your post as we are the same age and diagnosed around the same time (me- August 2020). I was definitely not quite as sporty as you but did play golf once a week and had spent much of the preceding few years refurbishing a semi derelict house. Still working full time of course.
I am now taking 4.5 mg per day having dropped 0.5mg per month from about 9mg onwards. I think this was the secret for reductions around that level.
First flare was around January when dropping to 4mg. Started to get pains in my right shoulder, neck and arm which i put down to poor posture at work. Clearly not. Pain got progressively worse and then exploded in my left knee strangely (never had a problem there before)
I upped the dose to 10mg for a couple of weeks which seemed to do the trick. Still have minor shoulder aches but manageable. Also a severe pain in my left toe at intervals bizarrely.
I think i am probably stuck in the 'corridor of uncertainty' where there is seemingly a cross over between PMR pain and adrenal function re-start. Think i will stick on 4.5 mg for a while and see how i feel in a couple of months time when the weather is warmer.
At the outset i continued with golf and other things but it became very obvious that i reacted badly about two days after anything strenuous. Packed up golf and joined the local bowls club !
So its a waiting game for me. I will re-join the boys on the golf course when i can but there's no point pushing too quick it seems.
Not sure if this is a message to you or just an update for the gang. I read these posts most days but haven't contributed for a while. Good luck
Nick
I've had similar problems and now think a lot of it has to do with a weakening effect of pred on my muscles. The only thing which helped my shoulders last year was a major increase in pred, I tried everything else first. After I got that sorted I was able to taper very slowly back to a level I'm more accustomed to but now that I'm trying to get back to 2.5 the shoulder is acting up again. Caught on the horns of a dilemma. Take more pred, suffer more muscle weakening. Don't take more pred, suffer more pain. But as I don't seem to have the usual PMR symptoms, unlike last year, I'm just going to stop tapering for a while and wait for warmer weather and maybe an improvement. I thought I had become a star pupil of patience, but right now I'm not feeling it!
Thanks for your response Nick, I must admit I often wonder how you make that progression to a lower dosage of pred without having the aches/stiffness return as your adrenals try to kick in again and rather than live with it, up your doseage again. Anyway not sure I'm ready for the bowls yet!!
Q..“I must admit I often wonder how you make that progression to a lower dosage of pred without having the aches/stiffness return”
A. By reducing slowly -in time and dose and not going below the level your illness needs at that particular point.
Thanks again Dorset Lady
I think you’ve probably got the message by now 🤣😂
Good luck!
It takes time and we all have different time scale. If there is a connection between PMR and exercise, from my experience, moderate activity helps to avoid stiffness caused by PMR. I always feel much better after being active. Even 30 min walk makes a difference. As far as worrying of doing "too much", I can tell you that 4-5hrs per week of medium to high level of exercise did not prevent me to reduce down to 1~1.5mg dose after several years. I DO remember that I was in holding pattern at 5mg at stayed at that dose for more then a year. Pay attention to your symptoms and don't try to rush to zero pred... it usually ends up with flare.
“Moderate” being the key 😊
I think walking, just getting fresh air (for those who can't walk), is really important.
Thanks for your response Nikola, duly noted, it's quite apparent I'm in for the long ride, I must aquire patience
I haven’t read all the replies so forgive me if I am repeating info. 7mg is a very common place to get “stuck” because it is the point heere your adrenals need to restart. They stop working at higher doses because they are not needed. But since the body makes around 7mg equivalent daily naturally, they need to restart once the body goes under that 7mg level. However it can take the body quite a bit of time to realize it needs to restart and then do it. It can take an equal length of time to restart as they have been shut down. Sometimes never. So it often takes a much slower approach at around 7 so the body can start working again.
Thanks for your response, I'm getting the same message from everyone ie don't try and rush it, so I've had to change my whole mindset to future tapering and listening to my body
If you haven't already, consider reducing your carbohydrate and sugar intake to as near zero as you can manage. Carbohydrates contribute significantly to feeding inflammation in the body, which has no need for them for them to be included in the diet, although it is a very common misconception that it does. You may well find, as I did that, you will be able to reduce the pred to zero much quicker and that the pmr is less likely to flare up again. The information is there for anyone to find: have a go at doing some research
Thanks Sennetta, funnily enough my wife is on the Keto carb free diet and I just add potatoes and rice to mine, but maybe I'll try your suggestion and see if I notice any difference
You should also cut out sweet roots, but celeriac and swede/turnip are okay and some folk find sauteed radishes work well as a potato substitute! In terms of carbs, beer is terrible!!! And I love real ale - bit of a bummer, really. Good luck with it, I hope it works for you. But, of course, not everyone is the same.🙂
It will also reduce the risk of developing steroid-induced diabetes and the pred-assocaited weight gain and munchies! No to mention being a kindness to your Mrs!!!
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