does PMR eventually go away

[Pommygranny]

i have been diagnosed by GP with PMR since 2019 and probably had it before then. I have been prescribed preds 15 mg at the outset, tapered to 3 over 18 months and then had a severe relapse. Severe tiredness, couldn’t stop sleeping and couldn’t walk. Saw a consultant who confirmed PMR . Put up to 10 mh preds. Symptoms improved but not gone away. Currently on 9 mg preds but reluctant to reduce. Walking extremely slowly and Just about coping but beginning to despair it will ever go away. Are there any good news stories out there.

[DorsetLady PMRGCAuk volunteer]

Yes many..... but maybe not so many still on the forum. There are related posts, and this one from a few months ago..healthunlocked.com/pmrgcauk.........

[Chicama in reply to DorsetLady]

Good morning DL! Thanks for linking us to this lucky person. I saved some of her posts. I hope she doesn't delete her account because I found a wealth of information on flares, tapering, myofascial pain syndrome and more. So many people offered up how they are handling various situations... with humor and grace adding to my PMR knowledge bank. I would be directionless without this forum and the people contributing comments. I hope to do the same do the line. Thank you... and enjoy your day!

[DorsetLady PMRGCAuk volunteer in reply to Chicama]

I’m sure she won’t …,

I will enjoy my day -you too.

Will link her, do she see this reply

MamaBeagle

[PMRpro Ambassador]

Lots - but they are all away living life again!

About 90+% get off pred sooner or later but rarely in the 2 years bandied about by some doctors - that is a myth. some do but 4-6 years is a more reaalistic timescale for a lot.

I would suspect your 3mg adventure was as much your adrenal function not keeping up with the reduction in dose as the PMR itself on its own.

We have a theory (born of experience) that patients who had had PMR for a while before being diagnosed or who were messed about and allowed to flare early on, later struggle to reduce the dose.

[tangocharlie in reply to PMRpro]

My theory is that some of us just have a more aggressive version of PMR, and if it is treated the standard way, ie tapering dose of steroids according to a fixed formula, too soon or too quickly, we are left under-dosed, which not only causes great suffering, but as the inflammation is continually building up and flaring but not adequately treated (your dripping tap analogy), causes more prolonged damage. Only a theory, as we are only just now, thanks to some enlightened rheumatolgists and researchers, beginning to understand there are different 'types' of PMR and the one-size fits all approach advocated so long in the medical text books and even the rheumatology guidelines doesn't work for everyone and more flexibility and individualised treatment is needed for patients.

You (PMRPro) are familiar with this paper by rheumatologists at Leeds TH that showed that many people still had PMR after 5 years and started to put to bed the myth that it all just burns itself out in 2 years, but am sharing for those who haven't seen it before:

pubmed.ncbi.nlm.nih.gov/200...

[piglette]

As soon as people get to zero they rise like the phoenix and start living their lives again. Occasionally they have a relapse of course. Some come back and visit us, but the rest are out there having a whoopi time.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Some of us hang around -whether we’re wanted or not 😳! .. and I am living life 😂🤣

[piglette in reply to DorsetLady]

I forgot to say we can’t get rid of some. Hosta la Vista, Baby!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

😉

[autumnlass in reply to piglette]

😂xx

[PMRpro Ambassador in reply to piglette]

Is that a hint?????

[Kendrew in reply to DorsetLady]

....and thank goodness for us that you have!❤️

[Yorksman in reply to DorsetLady]

Keep hanging around. I've learnt a lot from you and others on this forum. Thanks

[PMRpro Ambassador in reply to piglette]

Think some manage to live a life long before zero pred

[MamaBeagle]

I was surprised and very honoured when DL suggested a post for you, and it was mine! I'm still at zero pred, last 0.5mg dose mid April. I was very lucky that I had a rather easy ride down the decreasing doses. BUT. After I'd found this forum, about 6 months after starting pred I lapped up the information on here. I soon realised that my doc was very sympathetic but didn't really understand PMR and its relationship with pred i.e he didn't realises it's PMR that wears the trousers, so to speak. The mantra SYMPTOMS RULE is key. So he agreed with me that I should take control. Do I did. He prescribed and I decided when I thought it was ok to taper.

I've just asked at my surgery what to do if this is a false dawn, when eventually I told them I was on zero. How quickly can I get pred. Answer was, just go to the dispensary, tell them you're flaring and get a script!

Mind you I'm yet to see a doctor here and we've been here 18 months now. I've had extremely good appointments with nurse practitioners who to my mind are fantastic. Is the NHS ditching GP s do you think because they are very elusive creatures in this neck of the woods🤔🤔

[PMRpro Ambassador in reply to MamaBeagle]

They are elusive everywhere!!!

[MamaBeagle in reply to PMRpro]

What on earth are they doing? I was told they dealt with emergencies!?? But their instructions on their press number.......message says in an emergency call 999🤷🏼‍♀️

[PMRpro Ambassador in reply to MamaBeagle]

My daughter works in the ED - she was working yesterday, I asked if she still existed, barely was the reply! She never seems to stop. It has been manic for weeks, no break in the stream of patients. And loads are proper poorly - usually because they couldn't get to see their GP before they got poorly ...

I'm staying here - I can still ring my GP, speak to her personally, and turn up and wait to see her the same day. I was in the ED last week, tendinitis and the GP said to go. Was 50 minutes from arriving at check-in to leaving the department with an ankle support and script for suitable pain relief. Might have been a different story though late afternoon after a minibus and car collided up the valley - 15 casualties will have occupied them for a while even if 4 were only minor scrapes!

[Exflex in reply to PMRpro]

The NHS is broken! I was in A&E with an active bleed to the head for 6hrs. I was mopping the blood with kitchen roll and went through quite a bit. The other patients looked on in horror watching me fill a carrier bag with blood stained sheets of kitchen roll. The wound was eventually closed after I waited for X-rays.

[MamaBeagle in reply to PMRpro]

I do reckon if the GPs don't make more of an appearance, they'll disappear after all they are only private contractors!!?? I've had excellent results seeing nurse practitioner and would choose seeing them anyday over the GP!!! I've got a niggling hip. I've got an appointment with physio on Friday, only a weeks wait. What they know about PMR🤷. After deciding to see somebody wouldn't you know it's on the mend. Was concerned it might be an awakening of PMR... don't think it is🤞🤞🤞

[autumnlass]

Actually … hope I’m not speaking in haste, but my practice and it’s team are pretty good .. 🤞🏼🤞🏼🤞🏼😀

[DorsetLady PMRGCAuk volunteer in reply to autumnlass]

Better slap a preservation order on them😊

[autumnlass in reply to DorsetLady]

Thanks DL I will! By the way on week 3 of your 7 week reduction plan to 7.5 mgm… really good 🤞🏼 so far… fingers crossed for that too! 😉

[DorsetLady PMRGCAuk volunteer in reply to autumnlass]

Good…

[PMRpro Ambassador in reply to autumnlass]

Send them chocolates ...

[autumnlass in reply to PMRpro]

I did too last Christmas to dispensary, receptionists and 4 bottles of vino to Docs! Proper little goody two shoes! 🤣🤣

[alangg]

In answer to your question, yes - it does go away (it did for me) but you have to be very patient and treat it with respect. Don't aggravate it, don't try to hurry it up, don't make your muscles try and do things that it doesn't like, and give it the food it needs (pred) at the right time and in the right dose.

It took me two and a half years to get to zero and I think I had an easy ride being male. I idd a very slow taper - especially coming down from about 8mg and stayed on the new dose for at least 4 weeks before attempting to reduce again.

Good luck and I hope it passes soon.

[Miserypants]

My Practice here in Devon has been fantastic all the way through lockdown and beyond. Doctors were seeing poorly patients face to face and continue to do so. Can't praise them enough.

[Nextoneplease in reply to Miserypants]

That’s good to hear 😊

I have been extremely unimpressed by our practice for the last couple of years, but last week the GP actually saw me in person for a very nasty bout of D & V. Gave me meds to help me keep down the pred etc 👍

May have to revise my opinion ….😊x

[tangocharlie]

Sounds to me that, for the moment anyway, you are not on enough steroids to manage the inflammation and symptoms and that's why you're feeling so rough. Every case of PMR is different and as PMRPro, Dorsetlady and the other experts on here are always telling us needs an individualised approach to treating it. For most people PMR goes away, but it could be 2, 3, 5 years or more years, there is no way of knowing at the beginning.

pubmed.ncbi.nlm.nih.gov/200...

[Joan-E-D]

Just to give you some hope. I had PMR for 3 years but have been in remission now for over 2 years. I built up my muscles slowly during Covid lockdown by taking walks in my fairly hilly local park. I'm probably rather less energetic than I was before PMR started but then I'm also older. So don't loose hope. I'm afraid you simply have to learn to live with it and accept the situation until one day it leaves you. I wish you well.

[maisiemo]

Hi ive had PMR for 10 years now started on 15mg pred been up and down over the years at the moment on 4.5mg ive just excepted its part of my life now i was told at the beginning it would be 18 months then it would be gone but no such luck mine hasn't been helped by my GP making me drop to fast but now i'm dropping really slowly 0.5mg every 3 months hopefully this will work i try to keep as active as i can it seems to help me if sit a lot or long car journeys i get stiff but i still enjoy my life and stay positive that one day it will leave my body 😊

[Boss302Fan]

If you are experiencing pain at 10 mg why did you reduce the dosage? Pain is a result of inflammation. Prednisone reduces inflammation which as a result reduces muscle damage. Reducing Pred is likely to cause the inflammation to increase and the pain along with it.

As to your original question that depends on the makeup of each individual that manifests the disease. I believe most do (I was first diagnosed in June 2019, now starting this Sunday I’ll be at 0.25 mg/d for a full week. Barring no flares the following week I’ll start wk 1 of progress from 0.25 to zero for the first time.

Some are rid of it in less than 2 years, many take more than 2 years but less than 6, and others longer than that with relapses. So, nobody really knows.

[Yorksman]

One of the things I've learnt from this forum is that everyone is different. Everyone has different symptoms and everyone needs a different approach to reducing Prednisolone. Unfortunately there is no one answer. Make full use of the forum, read and learn as much as you can and hopefully find what is right for you.