Had stiff muscles and increasingly sore knees and shoulders and finding it difficult/impossible bending down. Here in Wales Drs do not prescribe physiotherapy, we have to do it ourselves. Usually takes about about 12 weeks to be seen. However my disabled partner was in hospital with 2 osteoporotic vertebral fractures and was due home in a few days with a back brace and they saw me in 5 days. It the physio who sugguested PMR and blood tests at Dr pointed in that direction, about 3 weeks from initial symptoms. GP contacted Rheumatologist who said to the effect that as it was diagnosed so quickly, we could try going in fast and out fast. I take it my current regime is a direct result? Started on 12.5 mg. 2 weeks later CRP had dropped from 15 to 1 and dropped to 10mg and I am due to try to go down to 7.5mg later this week. No mention of Christmas stress and by the way, my partner died literally over night of sepsis the day after I dropped from 12.5 to 10. I spent some time reading this morning here through about maybe not dropping down in winter and taking a year or more to go down 5mg and I am just confused. Is it just because I haven't had prednisolone in the system v long? Or what?
Curious about my experiance. Interested in what o... - PMRGCAuk
Curious about my experiance. Interested in what others think?
Oh my goodness! That’s so hard on you and now this. 💐
First things first, do you have anyone who can accompany you to any appointments? You may have to fight your corner here because some rheumatologists seem to see PMR as a bunch of symptoms on paper and a treatment plan as figures on paper. If they don’t factor in the human, quality of life and the right of the patient to choose what is best for them. You may need some backup to question their rationale so you know why and if you are to suffer again they need to know what it means to you to live their idea. Perhaps you feel strong enough but many in better times can find it difficult to see the doctor to ‘see’ them.
Question one is how effective has the Pred been? Question 2 is with this in and out fast, what exactly is the objective? Some docs like to undo the therapy and see the symptoms return for themselves? Whatever it is, they owe you a plan if you are potentially going to have to go back to pain and a very good reason for this.
For a start off, a more recommended starting dose for PMR is 15mg and then hold it there for 4 sometimes 6 weeks to get on top of the inflammation before reducing, providing the patient is comfortable. Your CRP going down is to be expected because Pred is a powerful anti inflammatory and the dose has been going its job. The main thing to remember is that Pred is just a safety net to protect you form inflammation until your body decides to stop attacking itself. This is why people reduce very slowly over a few years.
Anyway, others will reply so sit tight.
Hi and welcome, and so sorry to hear about your partner, my sincere condolences.
As for -
Rheumatologist who said to the effect that as it was diagnosed so quickly, we could try going in fast and out fast -
That’s a new one on me! Might work if you are lucky, and if it was triggered by Covid and/or Covid vaccine, if it doesn’t you may be in a pickle - and that you certainly don’t need when trying to cope with bereavement.
Most importantly, how do you feel at 10mg and how long have you been at that dose?
You could try the drop to 7.5mg and see how that goes, but I think you need to be aware that normally under 10mg the advice is 1mg every 4-8 weeks [depending on patient’s wishes and activity of disease]. So be ready to contactRheumy/GP if you get a return of symptoms.
Maybe have a read through this link -
healthunlocked.com/pmrgcauk...
Do hope your Rheumy’s approach works for you, it would be very good news, and do keep us informed please…
The rheumstologist was consulted by my GP who is really good and does listen. The 12.5 was as a result of a well respected research document which concluded in general terms if you are female and in particular have a normal bmi then its pretty much guaranteed to stop the PMR in its tracks. Worked for me in about 6 hours. I was on that for weeks.Started 10mg 2 weeks ago this Thursday. I am due for 7.5 or whatever I settle on, more if I need it. Then blood on 19th with review on 24th Jan. I am aware of muscle tone loss and have continued power vibe classes x2 a week throughout. I am 74 and can't afford muscle loss. So after some exercise I get a little soreness in my shoulders but no movement restriction, ie the bra tango and seatbelt manoeuvres! In terms thinking about stress , I am probably better off than I have been in years. Had all the symptoms of chronic cortisol since 2020 due to needing to be hypervigilant as my partner had had strokes and as well as hemiplegia was very dysphasic ie his mind was working fine but his mouth wouldn't cooperate. OK so I have a funeral to organise but that a walk in the park compared with the last 6 months which have been seriously stressful. Thanks for all the comments and helpful advice. I will try what I have been told to do and if it doesn't work I will retreat a bit.
That really isn't the conclusion of the research paper if it is the one I'm thinking of. It actually found that 12,5mg pred as a starting dose worked to get 75% of the patients in the study into remission in a MONTH. And it didn't mean they got off pred altogether. It also wasn't a particular large study, 60 patients. They also only looked at patients fulfilling the Bird criteria - and believe me, there are probably more patients with PMR who DON'T fit them!
ncbi.nlm.nih.gov/pmc/articl....
You start on a dose that will probably be too much and then taper to find the lowest effective dose. However - how the PMR progresses after that is an unknown. And while you think you are in a good place now - that is also an unknown. I cared for my husband alone during his final illness which coincided with Covid. There was no option of any help and I have no family here, I live in Italy, the nearest is in North Yorkshire, you may have met her if you frequented Scarborough ED or in an earlier life as a paramedic. I survived all that pretty well, albeit on a highish dose of pred, but a few months after his death, it hit like a ton of bricks.
I'm so sorry - what a dreadful experience. Hugs.
I have no idea what world this lot are living in when they think a quick burst of pred will deal with the PMR we talk about here, Another rheumy had a similar approach for someone else on the forum recently. Since Covid jabs there does seem to be a reactive form to the vaccine that does clear relatively quickly but a vaccine of any sort can trigger PMR. You will get off pred more easily with this sort of approach - but the chances are the PMR symptoms will return in very short order at some point. PROVIDING they allow you to react immediately there is any sign of symptoms returning then it may work OK - even well. But if they don't, you may well suffer unnecessarily.
I'd actually had PMR for over 5 years before being given pred at all and then it wasn't with PMR being the diagnosis. He was very reluctant about that. But he gave me 6 weeks of pred, 2 weeks each of 15, 10, 5 and stop. Within 6 hours of the first dose I had a minor miracle - about 80-odd% relief of symptoms. In a similar time scale having missed the first 5mg tablet I was immobile and in excruciating pain in bed. He wasn't interested - although that is said to be typical in PMR - and insisted it was an inflammatory arthritis. My joints have never been a problem and there is no sign of arthritis even now. Whatever - I had been fine at 5mg, maybe I wasn't at it long enough for inflammation to build up again. I have never been able to get to 5mg for long since, We see that in a lot of people, their rheumies want the patient off pred asap, they flare and struggle to get things under control again. That is our concern with this approach.
IF you drop to 7.5mg or even 5mg and can stay there a month and are OK, then it is a great way to get to a low dose, But the risk with dropping the dose so fast is if/when it does go pear-shaped, you don't REALLY know where you crossed the line between OK/not OK.
Basically, PMR is a chronic illness and it doesn't even go away in the 2 years they are so keen on quoting. The pred cures nothing, it is a management strategy for however long the underlying autoimmune cause of the symptoms we call PMR is active. And NO-ONE can predict how long that will be.
That sounds horrendous! Luckily my surgery tell me pretty much do what is good for me. I appear to be a hyper responder to some medications and rather than me keeping on ringing up to say I am over reacting again, the understanding is go decide what you need and then we know what to put on the next prescription. Thank you for all the warnings and advice. I will be very careful. May well put off the reduction for a few days. If there is any adverse response with the first dose I will return to 10 mg for a week and then try 8.75? See how it goes.
Try the reduction - you may be lucky and you are OK. But from now on - slow down, If the 2,5mg reduction doesn't work, do 1mg at a time - or have they just given you 5mg tablets?
That sounds good. Have 2.5 s and John left a few 1mg behind which I would be quite happy to avail myself of should I need them . Thank you so much. Thats v reassuring.
Can't find the comment that asked for an update so am popping it in here. 4 days in and 7.5mg is fine. There has certainly no movement restriction, still a lot of muscle loss but no real soreness. No tiredness and still an element of hyperactivity, good thing as I still have a lot going on!Also reread my initial comment on the reason for the 12.5 mg starter dose and your response. I get why you thought I was anticipating a cure which you swiftly disabused me of! However that was not what I intended. I was in fact referring to the full remission with that 12.5 as a starter, certainly felt miraculous to me when it happened.
Thanks guys Feeling far more secure and while I had been left in control by the system, I now am much more confident that I can manoeuvre safely til the next review.
No - not sure where that was, DL and I never ask for updates, we assume we will hear!!
There are doctors who seem to thing there is an extra-short answer when a patient is diagnosed quickly - but it is in their dreams! Most people who ended up here in the past had been told PMR is a short illness and often were disappointed when it wasn't gone in 2 years - or even worse made to feel failures by their doctors, as if they hadn't tried hard enough to get off pred, So our first reaction is usually to emphasise that isn't the nature of PMR ...
..actually I did say keep us informed...sometime I do, sometimes I don't... 🤦♀️
Sorry - I did look at the other replies - must have missed it!
I am so sorry for the shocking loss of your partner! ❤️
Hi Lindy, I remember the journey well.I was diagnosed in August 2021,it came on suddenly and I felt quite ill, but once I started off with 15mgs of prednisolone, I soon began to feel more human.
After a month I went down to 10mgs, and from then on I decreased my tablets very slowly, every 4 to 6 weeks by 0.5 mgs at a time.
My stumbling block was around the 7mg and then 5 mg mark, but it definitely worked for me to reduce as slow as possible, like dead slow and by June 2023 I eventually came off the steroids to.my relief and have been OK since then.
Everyone is different with their experiences, but I wish you well and hope you can eventually come off the steroids and feel healthy again,
Kind regards Pat
T hat is really useful, thank you and confirms what others have said. I think I am going to go down to 7.5 on Thursday but with extreme caution about staying there. Any bad signs I will be back up again and take the slow route.
Just read this link provided by Dorsetshirelady on another post healthunlocked.com/pmrgcauk... and my rather perplexing instructions seem to have a possible logic to them. From this I gather prednisolone < 2weeks does not have the same impact on the adrenals as longer than that and down to and possibly including 7.5 the cortisol is replaced completely by pred and hence the nasty side effects do not make themselves too apparent if you are doing it quick enough4. Is that how others read it? After that you need to give the adrenals time to gently take up the slack?
There is a logic in the quick taper for many things - however, PMR is not many things, it is a chronic condition that requires management with pred over a long period, it is extremely unusual for patients to be able to manage on under 10mg within a couple of months of diagnosis - whatever your rheumy may think. It would be wonderful if patients were diagnosed quickly and if a short sharp burst of pred would "cure" it. But they aren't - and a short sharp burst of pred cures nothing here, the underlying autoimmune condition that causes the inflammation goes on, and on, and ... A small proportion of patients are able to get off pred in under a year - but that is plenty long enough for adrenal function to get into hibernation - and they also are at a far higher risk of relapse later. Only a third are off pred in 2 years. And the rest obviously need longer. Whatever he may believe - the majority are on pred that long because of PMR still being active, not because of adrenal problems.
PMRpro has explained, and whilst the adrenals may not be adversely affected if you are on Pred for less than 2 - 3 weeks [4 absolute maximum] for some acute issues…you are not in that situation. PMR doesn’t ‘go away’ within` a month… and needs treatment for years rather than months, and certainly not weeks.
I just had a rheumy appointment and asked him about this concept of "been diagnosed quickly so a short sharp course of pred works in a third" that we've heard recently - no hesitation on his part "then it wasn't PMR".
Excellent response -but then it would be… Hope all good with you😊
The perfect appointment - listened to, sympathised with, not hurried and a plan put in place to try and sort the sacroiliac problem with minimum risk.
Good -but as it should be really - as you say-stay put! 😊
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