Sorry for the long post, but hoping I can call on some more experienced members for advice.
I am at the end of week 3 of a 15mg dose of Prednisolone for suspected PMR. I take the full dose at breakfast time. Prior to starting the steroids I had the inflammation / pain 24hrs a day in my shoulders/upper arms with hips being affected much less, although these were bad when the condition first showed itself.
The steroids have helped in that the pain is eased greatly around lunchtime/early afternoon and doesn't come back too badly until late evening / overnight but then I am out of action for the next morning again! I've not been able to drive since diagnosis due to the shoulder pain / arm weakness and when it's at it's worst I can even lift a kettle!
The GP has just prescribed another 3 weeks on the same dose and says they won't up the dose as this is the recommended course.
Does this sound as if I am on the right tracks? I was previously fit (ish!!) and well and am finding this all a bit difficult.
We run a couple of holiday lodges and my job involves cleaning / making beds etc etc as well as keeping the garden in good order. I'm able to do the admin for the bookings (and luckily at this time of year it's mainly just weekend bookings (and hubbie takes an active role in the lodge cleaning etc)), but I am a bit concerned going forward.
If I need to be patient I will of course but just wanted to check this was what one would expect to be experiencing.
Thank you.
Written by
Ownpostcode
To view profiles and participate in discussions please or .
Your GP is right in that 15mg is a typical dose at which to start - but according to guidelines it can in fact be anywhere between 25 and 12.5mg. And it appears to me that 15mg is not quite enough for you. I would have hoped the inflammation/ pain would be less by now. The trouble is, the longer it’s left to build up, the higher the dose you may need.
Could you contact your GP, explain how bad things are and suggest a trial at 20mg?
Having said that, PMR is an autoimmune disorder and you will find that you need to pace yourself, even after the pred gets on top of the pain. For the moment, cleaning and gardening such as you describe may (will ?) be too much for you. You need to do your part and get as much rest as you can, as well as taking the meds.
It will get better 😊
Others will be along soon with more information I’m sure.
Also, get your GP to explain ' what also may come' with the disease & prednisolone.
If they can't explain, then in my experience, they do not know very much about this disease.
While other issues with the disease & Pred are on a sliding scale with many struck down with it, be prepared for what may come.
It took me 7 months of going through hell, thinking I was going bonkers & suffering with all sorts of symptoms which I now know are part of the disease & side effects of Pred. At the time I didn't. No one explained what was to come.
If i'd known earlier after diagnoses it would have taken away the unkown & the extra anxiety. I could have also consulted with my employer earlier.
It's only after joining this fantastic help group that all was explained.
Thank you. I feel the GP was reading from a 'script'. I had done a little research myself (which led me to this charity) but just needed a bit more certainty / real experiences to be able I to re-contact the GP.Sorry you had such a difficult experience, it's so tricky when people's pain thresholds are so variable. I'm not one of those people that visits the GP for every sniffle but knew this wasn't 'aging' pains ... I'm only 59 in any case!
The GP is not 100% correct - the starting dose quoted in the guidelines is along the lines of “between 12.5mg -25mg” … although preferred starting dose is 15mg.
A 70% improvement should be expected with 3weeks, and then tapering can be considered. If that improvement is not achieved then an increase to 20mg for another 3 weeks is suggested.
Some of the information from NICE - which is maybe what the GP is following is a bit woolly- but even they state this-
Make a working diagnosis of PMR if there is a patient-reported global improvement of 70% or more within a week of corticosteroid treatment and normalization of inflammatory markers within 4 weeks.
If there is a lesser response, consider increasing the dose to 20 mg prednisolone and reassess response.
If, despite increasing the dose of prednisolone, response is still less than 70%, reconsider the diagnosis and refer to an appropriate specialist.
Maybe for your own information have a look at this -
You may find that another 3 weeks at 15mg does give an improvement - but from what you say it doesn’t sound it’s enough, and certainly not lasting 24 hours… so you do need more.
paying particular attention to points 3 and 4 in the summary. Not all patients are the same, some need more than 15mg and more than a couple of weeks to responds and both initiation of therapy and subsequent tapering must be adjusted to the individual.
However, this is another important document - Treat to target. Your target is remission of symptoms - and you treat with the dose you require for that. They haven't done that yet - so it is time to start.
Even 1mg can be the difference between success and failure in PMR and the obvious thing to do when a given dose is obviously not quite enough is to try a bit more. They need to use their gumption ...
The information given to you on this site is from people who have lived with or are still living with PMR and know what they are talking about from experience. If you decide to take their advice,which is your choice, then stick your guns when you see a rheumatologist or a GP and let them know what you want to happen. It’s REALLY hard to do as they mostly think they know best but it’s your body and your pain and to some extent you’re disabled because of the PMR. I cried when the rheumatologist told me I couldn’t increase my preds because of the “ guidelines” so he relented and told me to increase to 20mg from 15mg to see how things went. He gave me enough for 2 weeks then couldn’t see me for over 3 weeks so after the initial use of 20 where I could move/ sleep pain free I had to return to 15 for some days to make the preds last. The return to terrible pain and stiffness was almost immediate. Good luck and be strong
Thank you so much. I feel I might have a bit of a battle on my hands but I'm determined to be in control of this now I've read a few comments -your message was really helpful. I'm sorry you had to fight to get your own meds right. Hope things are settled now for you.
They have settled now thank you and atm I get repeat prescriptions, so no battles with GP’s. After 16 months I’ve tapered down to 9.5 mg with only a couple of flares, once after a bout of vomiting where the pain after waking reminded me how awful the pain of PMR is.
Just so that you are aware, my starting dose was 20mg, and, even at that level, I experienced symptoms such as you describe. My GP upped me to 30mg, which she said she thought I needed to clear the built up inflammation .
That worked, and I stayed at that level for just over three weeks.
I have posted this so you can see that your GP probably needs to be somewhat more flexible in order to help you to get the pain under better control. Not saying you need 30mg, but I suggest you do need more than 15.
Hello Ownpostcode and welcome. This forum is a godsend, provides advice and information, research papers to challenge the medics when they get it wrong which yours clearly has at the moment.
I am relatively new and know how devastating it can feel when PMR is diagnosed but I remain optimistic and more in control these days thanks to learning all I can and with the support from this forum.
Just to say I was started on 20mgs which worked for me and I sincerely hope that it will work for you, if not a little more is needed to get you on track. I wish you well and look forward to hearing how you schooled the GP. x
Thank you so much. I feel more confident in 'tackling' my GP now some of these helpful responses have come in. I don't want to get off-side with the medical profession but I think I'm armed with enough information now to at least have a more helpful dialogue.
Can I just suggest if the GP queries where you got your information from - you reply from the charity, not from ‘off the internet’ . They are more likely to listen if they think it’s from a reputable source - rather than dr Google! This forum is overseen by the charity….
My GP started me on 25mg, I think because I’d had symptoms for some months before consulting him, and they’d become quite severe. I was completely free of them within a couple of days, tapering started after a few weeks and was 2.5mg every two weeks so I came down quite quickly.
At 10mg the tapering was reduced to 1 mg steps. I had a couple of minor flares around 5mg, added in methotrexate, got off pred completely just shy of two years after starting and got off MTX after a further year. Summary:
diagnosed December 2020 and started on 25mg pred;
added in MTX late 2021;
got to zero pred late 2022;
ceased MTX Dec 2023 and all good since then.
It’s a very individual thing though and what works for one person won’t necessarily be right for another. I know I’ve been very lucky to have had well informed GPs (I was diagnosed while living in Australia but my final year on MTX was in UK) and had immediate referral and easy access to rheumatology for the first two years.
Thank you so much for sharing your story. This is all helpful information. The initial appointment I had with the GP was before my symptoms got really bad .... But still bad enough to make the appt. Since then they've only been telephone appointments which possibly hasn't helped my case!
I will certainly be following up now and am armed with much more 'ammunition'.
Happily, I'm now PMR free after 3 years. I also started my PMR journey at 15 mg but it didn't touch the sides. I was the put up to 25 mg and, hey-ho, within 3 days pain gone to the point where it didn't bother me at all. To paraphrase PMRpro's famous analogy, PMR is like a dripping tap, if you don't fully tackle it, eventually the bucket will overflow and you will be back where you started.
Thank you. So glad you got the correct dose .... I'm dreaming of pain free, when it's bad it's awful isn't it. No position is comfortable and you can't get any relief. I'm sure I'm driving my husband mad with all the groaning and moaning. Luckily he has been very supportive.
Hello and welcome. I hope you manage to get your doctor to think again about your required dose of prednisolone at this stage. 15mg might not be quite enough to deal with the build up of inflammation that has left you in such a sorry state.
It is vital that you pace yourself now and take frequent rests. I found that splitting my dose 1/3 rd at night and 2/3rds in the morning allowed me to make the early starts I needed to care for my pony and continue an active life.
PMR comes as a huge shock to all of us and demands a change in our lifestyles and more respect for our body’s needs. The prednisolone does not cure the PMR, just makes it more liveable with for as long as it wants to haunt our lives. Once you get the dose and the timing right it is much easier to live with, but we are all different and your GP needs to take that on board as much as you do.
Thank you for your help. I did wonder about splitting the dose so useful to read this worked for you.As you say it's a huge shock when one has been previously fit(ish) and well.
It's good to know there is such genuine support from forum members.
I live on the Isle of Wight and there is a local group I've made contact with but it's very small in terms of numbers.
I have just taken over the Hastings support group and trying to extend the group to include Rye but we are only four or five at the moment. Without the charity and this forum it is difficult to get in touch with others suffering from PMR and GCA. Nobody has ever heard of them and even doctors have little experience of them. Well done for reaching out for support and finding this site and the local support group.
One thing I would say, although we do suggest splitting the dose, and it's beneficial for some patients... best not try it whilst you are still in the early stages, and whilst you [and your GP] are find the correct dose for you.
The initial dose you are given is still part of the diagnostic process...and in theory if it's enough it should clear your symptoms by a considerable degree and last for 24 hours [ideally, but not always].
So take the Pred as instructed, one dose in the morning... if you start changing things it can muddy the waters and upset the GP... not what you want.
Hi Ownpostcode and welcome. You’ve been given plenty of advice already about needing to be on a higher dose of pred and if he still refuses to increase the dose I suggest you refer him to the NICE guidelines which Dorset Lady has given you. You may also find, as many of us do, that taking your pred at about 2am preferably with some food (yogurt, cheese or banana are popular choices) is beneficial. The inflammatory substances are released at about 4am so if pred is already in your system and working by then you don’t have pain trying to get out of bed in the morning. PMR pro explains this far better than I have. I hope your GP sees sense and increases your pred.
Thank you. That's useful info about the 2am pred dose. As you say there has been so much helpful information already give. I'm so grateful to people for taking the time to post.
Actually NICE don't issue guidelines as such, what they do is take the information from the guidelines produced by Rheumatologists... and present it in a CKS {Clinical Knowledge Summary}. Sometimes parts of which aren't always in line with the original.
But it seems to be what many GPs follow.. rather than the BSR/EULAR guidelines proper. Which may explain why things don't always go according to plan.
Welcome! Some of us have needed 30 mg to really feel better (I was one of them), stayed on that dose for 6 weeks. I was 54 when it started. I feel pretty decent most days..am down to 14 mg now. I also have had to taper VERY slowly, or I get a flare. We are all different and it seems you will have to be adamant with your GP. That or beg/cry..whatever it takes..I am not even kidding.
Remember, it's not them whose life is being turned upside down and I'd wager they would do whatever it takes to relieve themselves of this pain. Keep us posted..this forum is wonderful for info..these ladies know much more than the doctors 99% of the time.
Thank you for your advice. I've booked another appt with the GP but asked to see a different GP in the same practice in case this helps my case. You are right, there is a lot of knowledge in this forum!
Like you, when I took my 15mg dose at breakfast time, I experienced incapacitating pain in the mornings and only functioned at a near-normal level in the afternoon. I was waking at about 4am most mornings, so I decided to take the medication then, with a spoonful of yoghurt. I’m pleased to report that this regime worked for me. Luckily I managed to sleep when I went back to bed, so I wasn’t over-tired, and the pain had all but gone when I got up (about 7:30). It’s true that I sometimes ached by bed-time, but an occasional co-codamol allowed me to sleep. I wonder if this could work for you?
Thank you, it's certainly worth a try. I don't sleep very well in any case so quite happy to 'wake' to take meds if it's going to help. Assume you took the full 15mg at 4am?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed
Newly diagnosed PMR
Newly diagnosed with Pmr
Newly diagnosed with PMR in January 17
Prednisolone experience
