I overheard two ladies having a conversation in a shop recently along the lines of "he's got something called polymyalgia and the doctor says if it isn't gone in a year or two you've got it for life". So naturally my ears pricked up and I went over to talk to them. I said excuse me for being nosey but I couldn't help overhearing and did they know there was a charity for PMR and a Yorkshire sub-group. She said she had found the charity and her husband has had PMR for about 8 years now. So that blows the 2-year myth and the myth that men always get over it quicker but also reassures me a bit that there are some doctors who do come across people with long term PMR. I do hope the '2 years or for life' bit is wrong for him and others though. Even after 13 years I haven't entirely given up hope
Overheard in Waitrose (conversation about how lon... - PMRGCAuk
Overheard in Waitrose (conversation about how long PMR lasts)
I actually forgot to take 1 mg of prednisolone for the past two days and I’m ok ! Too busy concentrating on no carbs ! Took it today to be on the safe side. So without counting chickens I think I’ll be off it completely in the next month. That’s about 13 years. 
Do hope it continues - but even 1mg once a week can be enough!!!!! But it is a really good start.
That’s good to know. Well I’m very happy to try one 1 mg every couple of days. I’ve got this far. I don’t want to blow it . You’re a skier aren’t you ? I’m booked for January again this year. Loved it so much after a 13 year break. Thought I was past it - but life in the old dog yet !
WAS a skier. Gave up about 6 or 7 years ago after injury and illness and frankly - I couldn't justify the cost now. Ridiculous! Many locals besides me have given up. And far too many up there who think they can ski but can't and are downright dangerous.
We re going mid Jan when all those little tinkers will be at school and the slopes less crowded. I stick to sunny lower slopes and at the first hint of low light, straight back to the hotel. I did fall years ago once and despite the helmet banged my head or something. Brain shake perhaps. Lost my short term memory for a few hours. An amnesic episode. Frightened me at the time so I take it easy these days. I thought I’d spend the entire week in the spa last year but loved it. We were lucky with the conditions so one more go !
I don't know what world you live in - but mid Jan here is busy as my cousins found when booking recently - couldn't have their preferred dates! In mid-Jan some countries actually have "ski holidays"! And we are getting our US and Antipodean cousins here to ski ...
Wonder if it was the bang - or coincidence and a TGA? Transient global amnesia - I've had 3, only one coincided with fall and hitting my head in the fall.
Ooh er. TGA sounds a bit scary but it was at least 15 years ago and I later recalled tripping over the most ridiculously small bump as the sun was going down. Last year with Club Med in Val Thorens on 15th December it was very quiet and one of the cheapest weeks of the season. 11th January is another cheap week. In half term the price goes up x3.5 so we definitely couldn’t go then. I tried to beat their costs - flight, transfer, accommodation, ski pass, free ski instruction, all day food and drink, cocktails, caberet… I couldn’t get anywhere near their prices after flight/ transfer and little else. I doubt I’ll have the confidence to ski for many years beyond this one - coming up to 70 next year but I’ve been skiing since I was 15 so I don’t usually fall. Thinking my last year might be with my grandson before he reaches 5.
It is for people around you!! I didn't notice any of them until they resolved which they do sort of suddenly ... It is a great way to get through the ED though - not faster but you aren't aware of it!
My cousins still come, mid-70s both of them, and a local friend still skis at 82 but they go a few times a week all season like I used to. I got my fill over living here for about 10 years. Maybe my body had a limit of ski days ...
NEVER, EVER try to go the week of Pancake Day, even if it isn't halfterm in the UK - it is for most of Europe!!
Noted ! And that you get a free ski pass over 71 ! 😂
FREE???? You are joking!!! For normal tickets, under-8s are free PROVIDED an adult buys a full price ticket for the same period. Over-65s get 10% off, Season tickets are different. Just for our mountain the season ticket is 920 euros and over 70s pay 660 euros. Might be a bit less if I bought it before the 28th Nov, But if I were to buy a Dolomiti Pass, valid for a dozen ski areas including ours plus a few outwith the region for odd days, it costs 945 euros if bought before Christmas Eve, 1015 euros from Christmas Day, There must be a SuperSenior price for over 70s but I can't see it. But really I found I needed a Dolomiti Pass, too boring skiing 3x a week every week just here. I only skied for a couple of hours, from first thing until the hordes arrived ...
Oi you lot, I think you've gone a bit off a bit off piste I'm getting all these emails telling me I've got replies to my post and I've no idea what you're talking about 😆. We had a few flakes of snow here at the weekend and Britain came to a standstill. Well I certainly did, felt like going into lockdown all over again.
You do see the first line of any post in the email so you can ignore such things!! How do you think I manage sometimes 😂
Trouble is, I always want to and feel I should respond if somebody has been kind enough to reply to me but then we all disappear down rabbit holes .... or slippery slopes lol
Then save up the thread until there are several replies to read and THEN do it all in one, or two. And never feel you MUST reply to me!!!!!
I don't come on here on weekends, I try not to go on the computer or online at all. But then when I check my emails on Mondays there are eleventy million of them. All good fun, good to know you're all out there in our interconnected community x
OMG that is fantastic news! Do you feel OK, no stiffness, can raise your arms and get out of achair without making 'oof' noises? I'm cautiously trying to go down from 11 to 10mg and actually feel OK on 10 two days in a row to my surprise. Maybe Lucky 13 for us eh??!! Though if I get to 5 I'm sticking there having had problems with adrenals in the past going beyond that point. So so pleased for you!
My PMR didn’t affect my shoulders and arms. Mine was hips and groin downwards, at one point the balls of my feet seemed to be affected and occasionally I’d lose power in my legs whilst hauling myself upstairs using the banisters. Hobble hobble hobble !! Used a walking pole when out. Always felt fluey and ‘odd’ and downright downhearted. I still allow myself the occasional ‘Oof!’ But I think that’s just getting older unfortunately and after this length of time somewhat out of condition. But grateful to have made it this far ! I don’t rule out a flare or two.
I found 5 mgs downwards the most difficult so you are right to be circumspect and take it slow. I was stuck there for a year I think. That’s I think around the time I found this site and found the Pro’s DSNS taper plus fiddled about with my diet. I tried going plant based. I saw someone else going more carnivore. Wouldn’t be surprised if sugar/ carb was the culprit for me after all ! Good luck TangoCharlie. ( Keeeeep dancing !!)
I'm sure sugar is the root of all evil, well when it comes to the body functioning and possibly some types of inflammation anyway. I had loads of cake yesterday as I went to two birthday celebrations and I was so jittery afterwards, didn't sleep great and feel tired and sort of 'hungover' today with brain fog thrown in. Today is gong to be a write off but tomorrow is another day. Funny enough I've just ben to pick up my back brace from the orthotics dept at the hospital and I am so much more mobile I could probbly dance . Move over Dianne and Chris .....
Very hard to resist the cake sometimes especially if you’re hungry. I’m doing a craft fair with a friend this weekend. My friend said I’ll bring the coffee , the biccies and some cake and sandwiches. Very kind but I’m going to take a flask of lentil and bacon soup ! I’ve been really pleased to have your links re the Glucose Goddess. I really feel like it’s working. What was she said ? Was it coat your carbs ? Clearly you should have covered your cake in double cream !
Well neither is correct really - loads get off pred at some point between 2 and 10 years ...
Yes that's true, I think the average is just under 6 years, or is that out of date research now (Matteson)? But it was refreshing for me to discover that not all doctors think it goes away in a year or two. I wish I'd asked who their GP was so I could transfer 😆
It's based on cases so not really out of date as such, can't change the past facts. Though that also includes adrenal recovery of course. Half of patients are said to be off pred in 5.9 years or something. Which isn't the same as average.
My GP was aware of polymyalgia and diagnosed me quickly. She did qualify the outlook by saying you will taper down until you get off the prednisolone - if you ever do, that is. Double-edged comment - in one way set me up for failure but on the other hand at least she's not expecting me to be off in the 2-3 years some do.
Interesting, when I was dx my GP said it would all just burn itslef out but I'd be on steroids for 2 years. So when I still had it after 4 years and couldn't get below 5 ithout flaring I asked for a referral to a rheumatologist but that was frustrating as I got one who believed I was too young to have PMR and said even if I had had it it would have gone by now. So I was really confused and upset and didn't know what to do next so started Googling and luckily found this forum and the charity
Absolutely - this forum is a Godsend. My GP probably ended up going into burn out. She failed to diagnose pre-diabetes and one or two other things and clearly this happened with other patients as she was suspended for a time from the practice - I've seen her once since and .... Anyway, that's when I looked at Sarah Myhill and joined one of her online workshops which was affordable. I know many on this forum seem to hate her but she diagnosed pre-diabetes, recommended other things, including diet etc. and I've never looked back - so for me she has also been a Godsend.
Never heard of her but will put it on my 'To Google' list
She's not for everyone. The GMC has been trying to prosecute her for years (persecute would also be correct). As their counsel admitted the problem with Myhill is that her patients improve and so no-one will testify against her. In the end she decided to no longer defend herself as the costs have become sky-high so they had a field day. She helped me when my own GP did not - that's all I can say.
Everything in the body is analogous to a car( energy expenditure/ mechanics- ) or a cow ( fermenting gut, non fermenting gut)
And vitamin c, iodine over Himalayan rock salt breathing inhaled curatives.
Theories are very interesting-very practical . she will make you think in practical ( if not engineering verging on neuro divergent paths.) Not necessarily a bad thing at all.
If your life depends on mainstream pharmacology and typical paths exclusively, it may not be for you.
I personally do need main stream, but appreciate her education in holistic approach, her MD background, and her deep knowledge of vitamins and their applications. However, do hare with your own physician before taking .
I was just thinking today I wish our bodies could be treated like cars. If something is wrong you take your car to a trusted garage and they check it out and if they find anything wrong you book it in to be fixed, all within days. You even have to give it annual obligatory check p and clean bill of health. Yet with bodies it takes months and years to get something sorted. And another part of the analogy is putting the right kind of fuel in and keeping it regularly serviced and maintained. 😆
So very true!
Not sure...are you saying Himalayan salt is inferior to regular salt?
Whatever - it isn't superior. Salt is sodium chloride is salt - whatever fancy name or price it may boast. The size of the grains may make a difference in using it, that is a different matter. The impurities in these so-called natural salts are in such minute amounts they have no nutritional value - you will get any you need elsewhere.
No, I think it’s in large chunks so ( for inhaling the iodine ( Lugors brand at a certain %) it is best for absorption of the iodine. ( iodine and salt rock natural inhaler for purification of lungs- I’ve never ever done this and some people are allergic to iodine so a test of iodine ids done on inner forearm to test for reaction. It’s a Dr Sarah Mayhill thing. I do not / am not endorsing this.)
Thank you for taking the time to answer my question!
I am typing this very quietly. After 7 years on pred, I am now on half a mg a day and have been for a few months. Next step will be trying half a mg every 2 or three days and monitoring very carefully. We shall see ........................
Sounds VERY promising, hurrah
Well it’ll be 5 years in March with PMR for me and I have been on 2.5mg for a few months.
I have been tempted to up my game lately with the dosage as my arm pain is a devil, but I’m assuming it’s cos I’m stressed about things plus our imminent trip to Singapore & Oz in 3 weeks. I’ll keep on as I am I think unless things got worse.
There’s definitely no “one size fits all” in this PMR malarkey.
It doesn't matter WHY the PMR pain is worse - stress affects the disease process and can cause a flare. And why ruin a trip of a lifetime for the sake of a few mg pred? QOL is what matters/
I’ve had PMR since 2018 my rheumatologist wants me off pred in Feb so he can scan me to see what’s really wrong ???!!!! I’m text book ! Anyway I’m currently on 3mg can’t turn in bed etc sheer agony both arm, buttocks , neck with the addition of dreadful chest pain breathing out when I sneeze etc . Rheumatologist saw me like this month ago he said I’m too young to have had it and if it was PMR it would have gone by now ! … fed up to say least
Time for a second opinion if they are that dense. You are 58 - so over 50 when it started, planty old enough even with conservative ages. Mine started at 51. There are patients at 40+ - they need to get out more ...
Good idea, off to Rod Hughes with you if no luck where you are CSMM
I was in that exact same situation in 2016/17 and I was sure I still had PMR after nearly 5 years but the rheumie wouldn't believe me and also said I was too young to have it anyway (50 when I got it and 56 by then). To cut a long story short, I came off Pred abruptly (I was trying to get below 5mg) was given Hydrocortisone instead for my adrenals and eventually I had a PET CT scan which confirmed that I did have PMR all along, as I had tried to tell them. So push for a PET Ct scan it's the only way you can know for sure. You have to be on a very low dose of Pred, below 5 or none at all for inflammation to show so you could have one now on 3mg. PMR really affected my breathing too especially before diagnosis and when I came off steroids, though I kept being told it was unrelated so was sent for heart monitoring, asthma tests, etc etc. All came back negative but everything cleared up when I was back on steroids. PMR can affect just about any part of the body but has a prediliction for around the hip and shoulder joints. Keep going and fight for your rights, we're all behind you
Thank you so much great information. My top hips are killing me I have to sleep on my back you can imagine state of meeting to get up from that position !
Just out of interest, if you had enough spare steroids you might want to try going up to say 15 or so for a few days and see if all your aches and pains miraculously disappear as a fast response to steroids is also part of the PMR diagnosis
Oh I could skip through the hills on 15 as if I never had an ache ! They will kill me the Rheumatologist said …. And this misery will not 🤦♀️
That’s interesting to hear about a PET scan. Think I’ll push for that after our trip “down under”.
The doctors at my surgery just leave me to manage my own dosage and I’ve never been referred to a rheumy.
oh I’m sick of it all he said the last time I took blood your crp it was only 8mg no wonder I said I was taking 10mg of Pred !!! I can’t walk length of myself with pain almost back to pre diagnosis from my GP ! Anyway I’m going to have bloods done tomorrow and see GP ! Will see what the score on the doors are ? He also told me stress had nothing to do with PMR ! No one under 60 is allowed to be prescribed Pred with being seen by a Rheumatologist now as if they don’t see you before you start then they can’t diagnose properly ! Poor patients will be in some state if that’s case it took me two years to see him !!!!
Well my guy - and all his staff - say stress has LOADS to do with PMR. And HE is a world name in the field. He is also a very good clinician and a kind doctor.
I'm sure stress brings on flares, and might well be the final straw in starting the PMR ball rolling in the first place. But a GP I saw while trying to get the PMR dx (I saw several in the 10+ months it took to find the answer) told me I had stress which I denied and said the only stress was from being ill for 6 months, struggling to work as I was self-employed and nobody being able to tell me what was wrong with me. I remember he also went through some questionnaire to see if I was depressed, which I wasn't according to my score but borderline, and I found out the questionnaire was written by the Pharma company that makes anti-depressants. I'm absolutely sure there's no conflict of interest there huh? As a result anyway I agreed to try Amytriptaline which he said sorts out all sorts of things but of course it did nothing for what was undiagnosed PMR. 10 months in the end and about half a dozen GP visits to finally get a diagnosis despite classic symptoms
Sounds so like my carry on with GP etc I could now right a book with them I’ve no doubt my Rheumatologist is clueless as regards PmR
Many are clueless sadly but it's possible your rheumie has a cunning plan for February. See if you can get a PET-CT scan or at the very least an ultrasound with contrast because that can show inflammation, though not as well as a PET scan. I think that;s right isn't it PMRpro ?
Yes he’s planning a scan so at least that’s good
When I was diagnosed with Stills in 1979 they said likely triggered by stress
Take your Pred AFTER your blood test so they get a better picture
Yes definitely!
I know stress plays a big part in PMR - I can't deal with even a low level these days and I used to balance so many different things at once in my working life easily. I don't like to even think of doing the most simple job now .... How life changes.
Learning mindfulness techniques has really helped me in so many ways including minimising stress. I was pretty laid back to begin with but dealing with long term illness was a new load.
Exactly! Well done you. I learnt TM and have picked up my practice.
Thanks for this tangocharlie - gives me hope even if I cant get below 7mg at 3 years. I shall not give up hope either.
Below 10mg and only 3 years in - to me that's defo grounds for optimism
Thank you!!! I see it that way as well. As long as I can live and enjoy life ....
My understanding is that it IS for life. There is no 'cure'. But there are/ can be periods of remission and they can also be 'for life'.
We still know so little, and the researchers are now looking at different phenotypes to see if there are patterns and correlations as to why some people have it longer, some get both PMR and GCA etc etc. At the moment all we know is there is no fixed time to have PMR and every case is different, but not all the doctors know that!
You wrote, "I do hope the '2 years or for life' bit is wrong for him and others though. Even after 13 years I haven't entirely given up hope"
You and me both tangocharlie. I'm a bloke, and I've had PMR since 2009, so rather more than the 2 year myth. Not only that, but after reducing to 3mg in May last year, I had to go back up to 4mg in August this year. Currently I'm on 8mg for a week to 10 days, to try and overcome increasing pain in both shoulders. I'm hoping that the dose will overwhelm whatever's going on, and allow me to drop back to 4mg again in a few days time. So I don't think my PMR is going into remission any time soon, and that's after 15 years.
When it has lasted this long it seems to be a relapsing version - I have the same variety and every so often the disease activity seems to wake up a bit more and even without a change in pred dose, signs of it being active appear. I find that you can't always go back to the old dose - it really is more active for a few months and then dies down again.
My PMR has been so up and down over the years and very hard to manage, often made worse ironically by not being on enough steroids. For years I was on 5mg but it wasn't enough, I was hobbling and fatigued but told to carry on and get off steroids asap. In 2022 I was on 30mg after a GCA scare trying to get inflammation under control. Currently on around 10-12 which is miraculous compared to that but I've learned to expect the unexpected and have no idea what the future holds. I'm an optimist by nature but false hope is pointless. Que sera!
Just for the record: I was diagnosed and started pred mid 2015, although I'd definitely had symptoms for more than a year before. Was able to successfully discontinue pred at the beginning of February 2024, so 8.5 years of treatment, including an extremely long final taper. I came off pred in spring 2020 but had to go back on after 6 weeks, low dose (2-3 mg). Had major flare a few months later, so I'd say the six week flirtation with zero in 2020 was of less significance overall than the flare several months later, which may have been caused by my mistakenly believing pain symptoms were all associated with osteoarthritis and consequent denial that PMR was increasing activity. Low dose pred was my friend for most of my PMR years.
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