new to pmr

[Pmrnew-b]

I was diagnosed with PMR February 28 2025. I started having supine Oct 2024. They got really bad. I have been on prednisone. Startrd 25 mg for 5 days than 20 mg for five days, now 17.5 for 5 days, And tomorrow I’m to go to 15 mg for 15 days. Is it normal that I’m hurting. My shoulders, neck , hands legs and back. It is manageable but I feel really tired. I feel like my Rheumatologist is dropping my dose so fast. Theses 5 day drops are hard on my body. Will I always have some pain?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Will I always have some pain?

Not if your PMR is properly controlled..which unfortunately your isn’t at the moment.

Not sure where your Rheumy got this taper plan from but it’s not in line with the guidelines we know about.

Usual tapering plan is as follows - although as we know not everyone can manage on it -

. Daily prednisolone 15 mg for 3 weeks

. Then 12.5mg for 3 weeks

. Then 10mg for 4–6 weeks

. Then reduction by 1 mg every 4–8 weeks or alternate day reductions

Even though you started at a much higher dose, 5 days at any dose is just not enough, and certainly not at the beginning.

You might find that 15 days at 15mg [which is more in line with what we would expect] sorts things out… I do hope so. But if at the end of that time of you still feel like you do now you need to go back to Rheumy and tell them.

See this for general info-

healthunlocked.com/pmrgcauk...

[piglette]

I would say you are reducing much too fast. The rules are don’t reduce if you do not feel up to it as PMR will raise its ugly head and it always seems to win. Normally you would take the steroid dose for three to four weeks and then reduce around ten per cent. You have been asked to reduce nearly fifty per cent in four weeks. Who told you to reduce so fast? I should go back to them and say you are in pain.

[Pmrnew-b in reply to piglette]

My rheumatologist. I feel like they don’t really understand PMR. She told me it would be gone in one year on prednisone.

[piglette in reply to Pmrnew-b]

I do wish doctors would not do that. Mine said three to four years which probably is just as bad. Basically they don’t really know. I wonder if your rheumatologist has had any patients with PMR. If so they could have had people in real pain because they trust their doctors and think that there is no alternative to the horrendous pain. The trouble is taking too few steroids is really a waste of time if you are in bad pain, which is just not right.

[singingloud in reply to Pmrnew-b]

I’m in the USA too and many doctors and Rheumatologists don’t understand PMR. I fired the doctor who put me in 80 mg to start and told me not to speak until he asked a question. The first Rheumatologist I fired as he was sure I had RA so I went to Mayo Clinic who said I did have PMR. I changed to another rheumatologist who wanted me to go on Methotrexate and never would look at me or ask a question so I fired him.

In the meantime I found a wonderful PA who reads everything I send him in PMR and is letting me determine when to decrease my prednisone especially now I’m below 10 mg by .5mg and I’m finally 7.5 to 7mg.

Trust yourself and find someone who will listen to you. It’s your body and you don’t need to live with such pain.

I’m 5 1/5 years into this journey.

Take care.

[Flivoless in reply to Pmrnew-b]

Sadly, Prednisolone is not a cure for PMR, there isn't one, it's job is to control the pain, which it does admirably providing you take the right does for every part of your PMR journey. Your PMR may well abate in 12 months but that would be very unusual. My PMR lasted 3 years and there are others on here who have suffered far longer. So, be prepared for the long haul and hope for sooner.

[Pmrnew-b in reply to Flivoless]

Thank you. I am learning so much from this forum.

[tangocharlie in reply to Pmrnew-b]

That's an absolute sure sign she doesn't know anything about pmr then, ditch hither and find someone who does

[Charlie1boy in reply to piglette]

Agree absolutely.

[Bcol]

Hi, just to add to DL excellent advice, in some ways your start was as unconvential as mine was but with a big difference. I had a few days on 15mg, then my own doc put me up to 30mg for a week, then 25mg for a week, then 20mg. This is where the difference came, from 20mg I tapered more slowly than the usual recommendation, which, I think, enabled me to continue this unexpected journey with little or few problems.

[Pmrnew-b in reply to Bcol]

Thank you

[Angelsmummy]

Once again ,a so called bunch of professionals who know diddly squat about PMR/ GCA.Head banging on wall springs to mind!Thank god you found this forum where you will be treated with compassion,get PROPER advice,and be with people who like you are dealing with these diseases.Stay close to us all on here and you will find a better path ahead .Sincere best wishes to you P.xx💐💐

[Pmrnew-b in reply to Angelsmummy]

Thank you. I appreciate you all!

[Corgidog]

So sorry to hear that you’re in pain but relieved that you’ve found this Forum to seek advice, understanding and support from those who are living through this wretched PMR journey.

I concur with all the replies you’ve already received - good luck with your future tapering plan.

[Bigglesundone]

I feel your pain. I was on 25mg and dropped to zero in 25 days because Urology got themselves all excited about a PSA reading and needed to do MRIs and Ultrasound scans (much ado about nothing it turned out). By then I was the basket case I was before and the GP (who has other PMR patients) put me back on 15mg, which I have been on for 3 weeks and due to come down to 12.5mg tomorrow.

Part of the problem seems to be left hand right hand don't talk to each other as both Urology and Rheumatology have since admitted they can do the necessary exams whilst on Prednesilone, but in the ideal world prefer to see you 'clean' ..... So yes a rapid taper can, and my case, did put me back where you are.

It sounds as if your taper is too quick and something more like DorsetLady suggests is more typical. Something to discuss with your GP/Rheumatologist?

[Pmrnew-b in reply to Bigglesundone]

Thank you

[Meggsy]

I went to 25mg after 15 was not enough. My taper was by 2.5mg every 3 to 4 weeks to 15mg,then 1mg every 4 weeks to 10mg. I then had to change to 0.5mg tapers. I took 1 year 8 months to go from 25 to 5 mg and 4 years 5 months from 5 to zero - 6 years 1 month all up - eleven months ago. The lower you go the slower you go. I would have been lost without the knowledge and advice given by the wonderful volunteers and other very knowledgeable members on this forum. I wish you all the best. 🌻

[Pmrnew-b in reply to Meggsy]

😊

[PMRpro Ambassador]

That is a tapering plan for using pred in other situations and is totally unsuitable for PMR. That, and the fact they have told you it will be gone in a year suggests they have little practical experience of managing PMR - it is a long term condition, about 1 in 5 patients are able to stop pred in a year and are at a much higher risk of recurrence of symptoms. The vast majority need more than 2 years and some have it for many years.

You need a doctor who knows what they are doing - the current one doesn't.

[Groggrim in reply to PMRpro]

Thank you for repeating what my lady GP said to me, about the vast majority may need more than 2 years. Dr mentioned to me that 2 years slow taper is perfectly acceptable. Before that I had been made to feel I had to get down and off asap. Now I feel what's ok for me is ok 🙂

[ubaoz]

I was diagnosed with PMR by my very on-the-ball GP, who said at the time that my PMR would be gone after 2 years. But… only if I followed the textbook! Which he said wasn't a great guideline as, in his experience, very few patients were textbook.

I've had PMR since 2020 and only went under the care of a rheumatologist after I also developed GCA in 2022. I'm still on pred.

From what others on this forum suggest, and my own experience, a knowledgeable and interested GP is often all that's needed for management of PMR, along with your own acquired knowledge (which this forum is truly excellent for providing!). And I realise that such doctors can sometimes be like hen's teeth and somewhat hard to find, but they do exist, so are worth searching out (if you don't already have one), if you think that option might be more useful in your situation? I'm not sure how the system works in the US though.

Good luck and I hope your pain can be brought under control very soon.

[Pmrnew-b in reply to ubaoz]

Thank you. It’s hard putting my faith in a Doctor that seems to not understand I’m not textbook

[DorsetLady PMRGCAuk volunteer in reply to Pmrnew-b]

Actually as stated it’s your doctors approach that isn’t textbook - at least not for PMR..

[PMRpro Ambassador in reply to Pmrnew-b]

I suspect he's never even looked at a textbook on PMR to know one way or the other, He certainly didn't get the taper from one - nor from Guidelines.

[tangocharlie in reply to ubaoz]

Did he mean only if you were a textbook case? If you're not and you follow the textbook treatment it won't work, simple as that. And I've rarely come across a textbook case even having been on this forum and in support groups for 8 years now. Stick with this forum for the help you need

[ubaoz in reply to tangocharlie]

Not sure if you're replying to me or Pmrnew-b but my apologies if I wasn't clear. What my GP meant was that although the textbook said 2 years to remission, that wasn't his real-world experience of seeing patients with PMR. He basically said that was an 'official' guideline, but that my PMR would take however long it needed to go into remission.

And I completely agree with sticking with this forum to get good, helpful and practical information for sure. And a whole lot of kindness and compassion as well!

[tangocharlie in reply to ubaoz]

I see, what a great enlightened GP you're lucky. I hope he's sharing his experience with colleagues etc to spread the word

[ubaoz in reply to tangocharlie]

I suspect he does. I'm very lucky to have him as my doctor, that's for sure!

[ubaoz in reply to tangocharlie]

And, although I'm only guessing, I suspect too that those who may in fact be textbook cases, may not find their way to this forum as often as those of us who are 'non-textbook standard'.

[DorsetLady PMRGCAuk volunteer in reply to ubaoz]

Has been said many a time over the years -no reason for them to require our input…

[ubaoz in reply to DorsetLady]

Indeed!

[tangocharlie in reply to ubaoz]

I very much doubt there are any 'textbook cases'. We get a lot of recently dx people who aren't on here but come along to local support group meetings and they mostly start off well when first diagnosed but many if not all have problems once they start reducing, or with side effects of Pred their doctors doesn't tell them about. And these are the ones who have plucked up the courage to go out and ask for help, there must be so many more who just do as their doctor tells them whether it's working or not

[ubaoz in reply to tangocharlie]

If that's the case, the thing that puzzles me then is where did that two year duration thing come from? There must have been some relevance for at least some people for it to have been included in the textbooks? Or am I being naive about how medical textbooks are compiled? 😂

[tangocharlie in reply to ubaoz]

Our very own PMRPro and another one of the world experts in PMR, rheumatologist Dr Sarah Mackie, is trying to find out where that myth came from. Another conspiracy theory 😀

[DorsetLady PMRGCAuk volunteer in reply to ubaoz]

Probably from a very small study… of one!😊

[ubaoz in reply to DorsetLady]

😂

Trouble is we're all a case study of one!

[PMRpro Ambassador in reply to ubaoz]

Back in the 1980s a paper was published that said "Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. ". If you read the REST of the abstract, you see that "The median duration of therapy was 37.3 months. It was estimated that 40 percent of patients will require therapy longer than four years. " which is a very different thing. And they also say there were clearly 2 populations of patients: "The data support the concept of two patient populations--one with limited disease and another requiring long-term therapy ... The data suggest that, although corticosteroids may be discontinued in some patients with polymyalgia rheumatica, prolonged therapy is required in a significant number."

pubmed.ncbi.nlm.nih.gov/403...

I think someone picked up the 2 year figure and not the rest, More recent work supports those figures - but that isn't the headline that is remembered.

[tangocharlie in reply to PMRpro]

Fab link thanks. I've always thought there is no such thing as average (a theme picked up in books like Invisible women) and the median and modes and normal or bell curves more useful guides

[ubaoz in reply to PMRpro]

Veeeerrry interesting! Thanks for that info. Science can be incredibly selective sometimes… 😂

[PMRpro Ambassador in reply to ubaoz]

Not so much the science I tend to think - but the less scientific readers maybe?????

[ubaoz in reply to PMRpro]

Perhaps I should have said that the interpretation of science can be selective? 😊 And as you suggest, that interpretation is likely to be highly dependent on readers' knowledge and viewpoints. And how far into a paper they actually read!

[PMRpro Ambassador in reply to ubaoz]

Indeed!! A lot of medics are very poor scientists ...

[ubaoz in reply to PMRpro]

And most don't have time to read much of anything 'extra' either unfortunately

[Pmrnew-b in reply to ubaoz]

Oh I am so sorry if I came across wrong. I just meant ( I feel that my Rheumatologist may not have treated PMR very much) I appreciate her very much, I am so thankful to have found this forum. I feel it is opening my eyes in a positive way. Thank you all for your wisdom and sharing with me. 😀

[Flashback in reply to ubaoz]

could you tell me what your GCA symptoms were please?

[ubaoz in reply to Flashback]

My GCA symptoms started with a major flare up of PMR (after a period of extra stress, topped off with MOST foolishly physically overdoing things for two days) but rapidly escalated to include other more GCA-like symptoms, mostly on my RHS. A headache like someone was trying to force a large bolt through from one temple to the other, enlarged, painful temple veins, scalp soreness, jaw pain, especially on trying to open my mouth and/or eat, tightness and tingling up the side of my face, ear pain and increased tinnitus, very stiff and sore neck. Not so much in the way of eye symptoms – just a tightness and fullness in the eyeball and reduced eyeball movement, a few flashing lights and a bit more difficulty focussing. Brain fog. And fatigue like an elephant was sitting on me.

My GP sent me for urgent blood tests. ESR 75 and CRP 117 and said go straight to ED.

Because it was in the middle of Covid, things didn't move fast and it was several weeks of high doses of pred (including 3 days of IV pred initially) before a temporal artery biopsy could be done – it unsurprisingly came back negative, so when I eventually got to see a rheumatologist, she diagnosed me as biopsy-negative GCA based on my symptoms and response to the initial very high dose (IV) pred.

I hope this is of some help Flashback? If you read other people's profiles who have/have had GCA and describe it, you'll see that there is quite a wide variation in the symptoms people can develop. For me a really important thing was that I had previously read a lot of the posts about GCA out of interest before I actually developed the condition myself. I found that information MOST helpful when I started to get symptoms beyond PMR, particularly to know I needed to seek help and especially when it came time to advocate for myself in the ED department, where they wanted to turn me away because I'd managed to walk (stagger!) into the hospital unaided. Hooray for this forum!

[DorsetLady PMRGCAuk volunteer in reply to Flashback]

Do you think you might have GCA? Or it that just a general question out of interest . If the former then please tell us what symptoms you have, if the latter maybe look at this -

healthunlocked.com/pmrgcauk....

[Flashback in reply to DorsetLady]

Thank you for asking . I had severe nerve pain in left side of face into neck and head and tooth sensitivity. Pain when chewing too . Had the ultrasound and they were confident it wasn’t Gca as no sign of problems with arteries. So confident that they said no biopsy needed .

However I’d been 60 mg of Pred for 7 days so not sure if that would have stopped anything showing up . I also slight blurriness in left eye but Specsavers said eyes were fine .

I get these sharp needle like tingling feeling s in scalp - not really painful but odd . The jaw pain and tooth pain has now gone completely. I’m on 5 mg Pred and my Pmr symptoms are pretty much controlled with this . They were never too bad although some days I have slight flu like symptoms but nothing that stops me getting on with day to day life . The fear is GCA and sight loss and I see you lost sight in one eye so I’m so sorry that happened to you .

[DorsetLady PMRGCAuk volunteer in reply to Flashback]

Good to hear..and the 60mg may well have been enough to get inflammation under control so none shown.. and it was the correct dose just in case it was GCA.

Would say at 5mg , your “off days” could well be adrenals struggling a bit.. but a slow taper will help nudge them along.

Thanks for comments re eye, but 13 years down the line I don’t really think about now.. as you say, doesn’t stop my enjoying life.

[ubaoz]

Totally agree!