newbie, hello

[KTGraham]

I’m 58 and had never heard of PMR til last month. Went from being completely normal and age appropriate fit to completely debilitated and hardly able to get dressed - practically overnight. Extremely frightening experience. My fab GP quickly ran tests and worked out I had PMR. I’m responding well to steroids although have dropped from 68-64kg in a short time. Long term sick from work (nurse) while I invest some time in my recovery. Just started going out for walks and some restorative yoga classes. I’m worried that this is going to be for life now and won’t magically go away after this tapering year course of prednisolone that I’m on - but so thankful about how far I’ve come so far

[S4ndy]

Hi and welcome to the club no one wants to join. I was 54 when I was diagnosed. Had to give up my business of Exercise Professional and Activities Provider. I started on 30mg a day and now I am down to 4mg a day some 8 years later! So don't be surprised if the "year long tapering course" your GP has suggested turns into a longer stretch.That being said you could be one of the rare people that are able to taper off in one to two years but please do your research on this site and you will see that's rarely the case.

Others will be along with links and welcome advice. My advice is take each day as it comes, practice pacing and do not beat yourself up for having this condition. Be kind to yourself. You will get lots of help and advice here so glad you have found us.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome - maybe have a look at this introductory post- PMR isn't usually lifelong as it's a self limiting disease, but one year is extremely optimistic [on someone's behalf - I'm guessing GP!]

healthunlocked.com/pmrgcauk...

Please do have a ramble through the FAQs for lots more info.. and others experiences.

To find them see Featured Content under your post or Pinned Posts

[piglette]

It is a bit of a shock when you have been happily ambling through life and then suddenly BANG! My sister’s godmother had PMR when she was in her seventies. She then went totally back to normal and is now in her nineties.

[CupOfEarlGrey in reply to piglette]

My mother had exactly this experience! She was diagnosed in her 70’s and had PMR for 2 years. She’s now 94 and is fit and active. No PMR but some osteo arthritis. I’m hoping I have her genes! (58 and one year in with PMR) x

[PMRpro Ambassador]

Hi and welcome!

Oh dear: " this tapering year course of prednisolone that I’m on". Oh dear, oh dear. I'm sorry, but the likelihood of PMR disappearing in a year is pretty small. And I do wonder what she read that made her think a one year taper was what you would use in PMR. Because the only thing that mentions one year tapers that I know of is any studies on using Actemra/tocilizumab or possibly Kevzara (which i haven't read in detail), the biologics that do work as steroid sparers (not cures) but, needless to say, not available in the UK.

I was going to link you this study

pubmed.ncbi.nlm.nih.gov/232...

which has a taper over a period of 2 years which reduced the rate of relapses from 3 in 5 to 1 in 5. However - last week you could still read it online, free to air. Now you can't. That is 2 core articles we refer to a lot taken away. I'm not a happy bunny. However - maybe your hospital library could provide a copy?

There is a lot in the literature that claims that PMR lasts 18 months to 2 years. It doesn't. About 1 in 5 may get off pred in a year - but are at a much higher risk of relapse. That's because it hasn't actually gone away, it was just low enough activity to look as if it had. By 2 years about 1 in 3 have got to zero pred. Half of patients take up to 6 years - which means half of us take longer.

You titrate the pred dose down in small steps to find the lowest effective dose - same idea as titration with anything but titration UP the doses doesn't work well, you are always playing catch up. In the early stages the amount you need is more than it is likely to be later but you can't rush PMR - it is in charge and it bites back if you try to rush it. It doesn't go away by magic, the pred cures nothing, it is a management strategy and you will need some pred as long as the underlying autoimmune disorder than creates the inflammation is active. Some people DO get off pred in a couple of years - but it isn't guaranteed. Some people are able to work depending on what they do. I have a couple of friends with PMR who carried on nursing, there are others on the forum who couldn't and had to retire.

[KTGraham in reply to PMRpro]

Blimey I’m really hoping I can get back to work can’t afford retirement yet! Luckily I’m only on 22.5 hours a week. In a slower paced environment now so looking to try to get back in the new year 🤞🏼

[PMRpro Ambassador in reply to KTGraham]

There are quite a few roles in the NHS I could have filled way back then - but nothing that involved lifting or standing for long and your colleagues are key. But whatever you do - don't get too enthusiastic about tapering or you won't get back for a lot lot longer.

[KTGraham in reply to PMRpro]

Ty for advice. I’m definitely investing in my recovery. I will have a meeting with occy health before I go back so that they are fully aware of my situation. I don’t fancy the idea of setting up IVs/taking bloods - far too fiddly and if a get a sudden jolt of wrist pain (which I do sometimes ) it could all go wrong 😑

[PMRpro Ambassador in reply to KTGraham]

Good for you. NHS front line staff tend to be a bit too heroic sometimes!! I've lived with enough of them!

[ShinglesbeDamned in reply to PMRpro]

Biologics are now available in the UK, I’m going on them after a rough year on steroids. Can’t wait.

[KTGraham in reply to ShinglesbeDamned]

Will you be sharing your journey on here - if not heard of Biologics so just had to Google

[PMRpro Ambassador in reply to ShinglesbeDamned]

Which, what for? You don't tell us anything on your bio, And I think I would have heard if the rules had been changed.

[ShinglesbeDamned in reply to PMRpro]

Hi, I am being put on biologics for PMR , my consultant at Kings Hospital in London has now done all the tests to see if I qualify, i.e. TB free etc, awaiting the final chest X-Ray and a full body scan and then changing over to them in January 2025, this is all on the NHS.

P.S. I'm not sure which one yet though that's my fault as he did tell me the name!

[PMRpro Ambassador in reply to ShinglesbeDamned]

Must be as a special case then - or he's fudging it. Probably tocilizumab as that is what should be the most effective, or sarilumab. They are both used for RA but TCZ is only approved for GCA for a year and Takayasu's unlimited in the UK.And not at all for PMR as trials weren't done in PMR.

I hope it works for you - I'm not in the UK and have been on TCZ for nearly 3 years now and it has got me from 19mg to 7mg pred with no problems at all.

[Excelsior80]

i was diagnosed early this year, total shock and very debilitating but since taking prednisolone i feel fine apart from needing more rest. The tapering is going fine so far, on 7mg at the moment. But Im aware from other peoples experience that it could change. I didnt actually stop working from April to August . just couple days off sick ... but then I retired in the summer and now just filling in odd days at work that I can accept or refuse.

[KTGraham in reply to Excelsior80]

I’m on my 6th week of tapering steroids and this is the first week I feel actually a bit like a normal person- it’s lovely (12.5mg currently)

[Fatsiajaponica in reply to KTGraham]

Hi KT and welcome. So glad that you have found us, it has been such a support for me as well as good sound advice. It is a shock isn't it? I mean, who has ever heard of this disease let alone any idea how to manage it, including many GPs and Rheumatologists.

I see that you have already had some good advice from those who know with some reading and research. My take is that if managed appropriately you can get on with life but rest is so important and not doing too much is vital. I have found this out to my cost but am now settling on a very slow taper of pred. (currently 16mgs). Good that you are feeling well today, go slow on the tapers and that should remain. Arm yourself with the research and educate your GP so that they support you rather than drive a reduction which may cause problems. Good luck and let us know how you are getting on.

[KTGraham in reply to Fatsiajaponica]

Ty what a supportive group this is - I am not a very patient patient so as soon as I get a sniff of feeling okay I want to be doing something … which is then tiring - I’ve got to learn

[Indigo2417 in reply to KTGraham]

The Pinned post ‘Patience’ at the top right of the page has some very wise words.

[KTGraham in reply to Indigo2417]

ty for pointing that out. I’ve screenshotted it for myself …. And ready for my work review with occy health next week 😳

[Indigo2417 in reply to KTGraham]

It certainly is a life changing experience. All the best with your review.

[Hidden]

Hello, in my experience doctors can tend to have a 'one size fits all' approach and hand out a reducing schedule with a prescription for Prednisolone. I have learned far more on this forum than I have from the medical profession, I think I've seen my GP twice since I was diagnosed in August. Now they don't think I have PMR after all. Even a private rheumatologist isn't sure 🙄I feel as though I have been left dangling. I hope you get more pro active treatment.

The members here are lovely, so supportive without being pushy, welcome.

[Angelsmummy]

WelcomeKTG,sorry to hear of your diagnosis.As you can see by the kind,supportive,and invaluable advice given to you so far on the forum,you are never alone.Please don’t try and set yourself a time limit on anything ,the disease controls us I am afraid,it will leave when it has decided it has had enough of us and move on to someone else.Be very easy on yourself,especially seeing as Xmas is on our doorstep.Do too much at your own peril!Sending kind thoughts,xx💐😜

[sidra1968]

Welcome!

[Sunnyday365]

Hello

I too had the same situation. At 55 was healthy, worked out a bit, pickle ball, hikes, swimming, etc. then pains started and couldn't even get my arms out of the water. Finally diagnosed with PMR and started prednisone. I found this site and can say it has been more helpful then GP and Rheumy. I have tapered from 20 to .5 (!!) this month - so it has taken me three and half years but am very happy that I am doing okay on 1/2mg. If I stay here (vs. zero) I will be very happy. Good luck to you and be sure to continue to read the wealth of info from the 'experts' here that take time daily to offer all of us invaluable information.

[Missus835]

Hi there KT. Take it easy on the tapering. It's not a race to 0. One year is very optimistic for PMR and maybe in a perfect world. I'm 3 years in now, not having heard of it when finally diagnosed after 6 months of hell and being told the pain was "old age". I started at 20 mg of Pred in Jan 2022 and after many attempts at tapering (which always seems to be going well, until it's not), down to 6.5 mg and currently in a flare and upped it to 10 mg, which can happen if you taper too quickly. Unfortunately, I don't have a GP who works well under instruction, LOL and hence the quick taper. Some of us can do but .5 mg every couple of months. You're doing well to take time from work. Incorporate lots of rest into your day, even if you feel amazing. Eventually, I had to "retire" at 73 mostly due to other related complications, but hope springs eternal that this too shall pass. Stay with this group, because you won't find anywhere more knowledgeable than here. Cheers!

[KTGraham in reply to Missus835]

My GP seems very attentive- he actually text me today to see how my symptoms are. I think the biggest thing I’ve learnt from this group so far is that tapering may sometimes need to go back up a dose and not always down. Ty for your reply

[pmrdec112014]

Hi KTGraham.So sorry you have the need to join this group but you won't go far wrong by being a part of it!

The advice on here is second to none. None obviously from a qualified medical practitioner but from all those with the experience of PMR which is invaluable.

Even after all these years of having it I have only met one other person with it, and that was with in the past 6 months, that has not been part of a PMR support group so this group has been such a comfort.

Keep in touch and let us know how your 'journey' is going.