I am on 20mg of Prednisalone since a couple of weeks back when. had to tell the GP that 15 mg wasn't really cutting it. He is making arrangement for me to see a Rheumatologist and did say it wouldn't be long. I live close to Evesham UK and would be prepared to see one privately if anyone knows of a good one fairly close to me.
I often see comments on here which say "Do not taper when in pain". My pain has improved quite a bit on the new dose but l can't honestly say its non existent. I have settled into a routine of taking 2 pills very early in the morning 4-5am and 2 mid afternoon. My pain is almost completely in my right shoulder and is now just a bit sore with some stiffness, although it is virtually gone by the evening. Nothing l can't put up with. I don't have an appointment with the GP for a couple of weeks or so and l would like to try to reduce back to the 15mg if possible. Am l being too ambitious?
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marrabone
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The problem with "putting up" will a small amount of pain is that if you aren't careful it escalates into a lot more pain.
I'd give the 20mg another week or so.. and why such a rush to get back to 15mg when you have said that wasn't enough? And maybe a drop to 17.5mg first for 2-3 weeks, then to 15mg.
You really need to get everything under control in the first few weeks, then you will have an easier ride .. if you start with problems it can continue that way.
PMR isn't going away any time soon, so maybe ease off the gas and have a look at this -
Thank you for your advice, it does make sense. l will do as you say and wait to see how things are by my next appointment. I guess l have to learn to be patient!
I have never been pain free on prednisone. I saw a rheumie 2 months after starting pred (from my gp); I told him my left arm still was sore and achey. He said, “oh, you’ve got a bad case then.” Yep. I’m still stiff and sore all over, but my left arm doesn’t ache anymore. Increasing pred does not help the stiffness And soreness; it’s gonna remain, I think, until the pmr goes away and I can get off pred and strengthen my muscles.
I would try taking 3 of the tablets in the morning and 1 later - though why did you choose that pattern of 2 and 2? Sometimes you need a good dollop of pred in the morning which is when the new batch of inflammatory substances is shed in the body - none worth talking about is added during the day so any return of symptoms before the next daily dose is due is likely to be because the antiinflammatory effect of pred lasts from 12-36 hours so you may not be at a point where it lasts all day. The normal dosing is all the dose at once in the morning and having knocked out the inflammation for one day, you should usually be OK until next day. The split dose is only really needed if it doesn't last. And the second dose should be taken as early in the day as possible and be as small as possible to minimise sleep disturbance at night.
It took me a few months to get to no PMR pain, my hips and hands and feet were slow to clear up. But they look for 70% global improvement quickly to confirm the likelihood of PMR rather than an inflammatory arthritis. Some people are never pain-free - sometimes it can be OA or injury that has persisted. But the status you get to with the 20mg starting dose, and preferably with the blood markers as low as they will go if they apply, is what you will look to maintain ongoing. You should never feel worse at the end of a taper step than you did at the start. If you do - you have probably gone too low. You are not heading relentlessly to zero - the pred has cured nothing, it is a management strategy to allow a decent quality of life until the underlying cause of the PMR inflammation has burned out and gone into remission.
Thank you so much for this advice. What you say makes a lot of sense (why didn't l see it-duh!). I split the dose initially because l felt it wasn't seeing me through till the next morning, that was when l was on 15mg but then was taking them at 9am which was no good at all. I will try 3 x 5mg in the morning (4-5am) and see how l get on. If that helps, l may go back to taking them all in the morning.
Why should you see it? Have you got medical science qualifications and experience? Had you had PMR before? Had you read every post on here? And above all, you were in the middle of something new and confusing.
That's why we are here - been there, done that, made the mistakes, fought the medics (some of us at least) and our hope is to reduce the agonies others go through finding out what we have already learned. Some don't believe us and have to find out for themselves. That's fine - often their experiences add to our knowledge.
You may well still need a split dose - some do. But start with more in the morning and a top up later. See how it goes and we can have a discussion for tweaking it.
Hi, is it possible that you have an additional problem in your right shoulder that is not part of the PMR which usually presents bilaterally. Prednisolone at higher doses can mask a lot of other pains but non PMR pains might respond better to paracetomol.
There is an excellent consultant called Rod Hughes at Chertsey in Surrey.
Thank you for this idea. I'll bear it in mind and see how it goes with the new regime. I went the whole hog last night and took all four pills at 3am. My shoulder is definitely better this morning, although not completely. I do realise that it doesn't prove that there is no other injury there though. Although it was the last part of me to be affected and by then l was being very careful with what l did. Thank you for the Consultant recommendation but it's quite a stretch for me, from here.
Personally, providing the dose lasts a full 24 hours [which for some it doesn’t hence the split dose approach] I thinking taking the whole dose in one go gets your symptoms under better control, certainly early days.
Yes l did it initially because l thought having some later would carry me through to the morning to stop the discomfort which was, then, lasting until lunchtime. Thanks to this forum l realised that a very early am dose was more helpful. I do hate having to eat a biscuit in the middle of the night though! I've never been a biscuit eater. I don't think l could manage yoghurt or banana.
I knew I would never manage an early morning snack with pred so I split my daily dose 1/3 rd at bedtime and 2/3 in the morning. It worked very well for me.
Just putting tablets in a dessert spoon of yogurt would probably be enough - doesn’t need be a full pot. But whatever suits you. Even a drink of milk is enough.
If it was the last place to "catch" PMR, it is less likely it is an old injury - PMR tends to like our weak points.
Where are you - have you told us? I had a friend who travelled from Kent to Leeds to see Prof Mackie in the days when that was still possible (she is far too busy now and her waiting list is astronomical and does no private work) and it resulted in a correct diagnosis, missed by her local rheumy AND Prof Dasgupta. I would travel to Chertsey to see Rod from a lot of the UK in the absence of a a good one locally! He does a first appointment f2f and then telephone or video while a GP provides local care. It can work well and really is worth considering if you want to go privately.
Same as you it was all new to me about a month ago and not a lot of advice from GP. Initially took at breakfast about 9am but didn't see me through the 24 hrs. Fortunately found out from here the best result for me was 3 x 5mg around 4am with some slurps of milk and the 1 x 5mg about midday. Admittedly waking up at that time makes me a bit tired and eyes achy but it works
I have taken all four pills at 3am for the last 2 nights. The first morning was good with very little pain but then by mid evening it was returning in both shoulders and arms. I took all 4 last night because l feel l need to give it time and not keep chopping and changing. I am thinking your regime would have been the better move though.
That sounds a good idea to me - you have to experiment a bit to find what works best for you. Taking them all at once at 3am is good for mornings. If you do 3 tabs in the morning and the other one later it is often possible to do the split at a more civilised time because that later pill carries the effect to the full 24 hours and mornings are OK too.
I was pretty much pain free within two or three weeks, started on 15mg by a temp doctor then within three days upped to 30mg by my own doctor for a week, then 25mg for a week then 20mg from where I tapered down using one of the tapers from this site. I've taken the whole dose around 02:00 for most of the time, following advice from here. I don't understand why your doctor is not allowed to go above 20mg. I've never had a Rheumy and had excellent support and care from my own GP.
There are no "set guidelines" - guidelines are guidelines, not fixed in stone, and they are used in the way that suits the GP who will say "it's in the guidelines" when they want it to be and "guidelines are only guides" when they don't! We see it all the time.
What ALL recommendations or guidelines in the literature DO say is that they may need to be adjusted for the individual patient - higher doses, slower tapers, whatever.
This is a link to the last Recommendations - they are being revised but that is likely to take a couple of years,
In them, Box 1 is a simple Summary of their Recommendations and then each is discussed in greater depth further on, They emphasise shared care and decision making and adjustment of management on an individual basis. They also suggest "the lowest effective dose in the range 12.5 to 25mg" for the starting dose and up to 30mg if necessary:
"3, The panel conditionally recommends using the minimum effective GC dose within a range of 12.5–25 mg prednisone equivalent daily as the initial treatment of PMR. A higher initial prednisone dose within this range may be considered in patients with a high risk of relapse and low risk of adverse events, whereas in patients with relevant comorbidities (eg, diabetes, osteoporosis, glaucoma, etc) and other risk factors for GC-related side effects, a lower dose may be preferred. The panel discourages conditionally the use of initial doses ≤7.5 mg/day and strongly recommends against the use of initial doses >30 mg/day."
Two can play the Guidelines game - and you now have the BSR (British Society of Rheumatologists" offical line which I bet trumps what card he thinks he has to play.
And another very important publication is the treat to target - that means inducing remission of symptoms with medication and keeping it there:
Thank you for filling in your Bio/Profile: there's a lot more information there to back up this first post.
Prednisolone does not work like a painkiller. Its job is to suppress the immune system, which is mistakenly attacking healthy tissues. Treatment usually begins with the full dose being taken with breakfast when you first wake up in the morning. It should be taken like that every day for at least 2 to 3 weeks, before judging how well it has worked. Increasing from 15 to 20mg/day at this stage is not unusual.
To protect your stomach, the omeprazole should be taken at bedtime. That ensures it has taken full effect (which takes two hours) before the morning dose of steroids is swallowed.
The dosing regime can be adjusted later, if necessary, once your symptoms have responded and stabilised.
Thank you for the advice. I was taking Prednsalone at breakfast for that kind of time frame before splitting the dose as it wasn't working fully. Later it was increased to 20mg. I'm now finding that taking the meds during the night is giving me the best result. However l did not know about the omeprazole being taken at bedtime, that does make a lot of sense. I have been taking it for sometime due to oesophagitis and was always told to take it in the morning. I can't see that l will have any problems with heartburn etc on a double dose so l will take your advice. Many thanks!
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