Hallo everyone. I was diagnosed with PMR in May and began on 15 mg and have been reducing by 1mg/month ever since. I slowed it to 1/2mg/fortnight since 7 1/2mg, however, I am finding my shoulders, neck and upper back are very tight - especially first thing in the morning when I wake. I also have stiffness at the point where my legs meet the torso - not as bad as when first diagnosed but, nevertheless, it is now becoming very uncomfortable. I started to feel some stiffness return on reducing to 7mg but having reduce to 6 1/2 mg on Saturday I wake with a very stiff neck/shoulders - so I have taken an extra 1mg today - this takes me back to 7.5mg. I thought I would see how this feels and if OK stay on it for at least a couple of weeks. Does this sound reasonable? Then a slower reduction of 1/2 mg/month until I reach 5mg if it works and then a tapering reduction from there, as recommended on this website. Any thoughts appreciated - thank you.
Increased Prednisolone: Hallo everyone. I was... - PMRGCAuk
Increased Prednisolone
You need to reason with your prescribing doctor. There is no point in under dosing with Pred. The inflammation just continues to worsen. From time to time we reach an optimum dose. It is best to rest there or increase if, like you, you find that you have over-shot your best dose. I think that instinctively you are doing the right thing. However, it is worrying to press on without your doctor’s blessing. I, and many others are trusted by our doctors to adjust the dose, especially now that we cannot have doctors on -call.
Thank you, Sheffield Jane. I have emailed my surgery to let my GP know. I speak to her every month by phone and I did say that if the stiffness increased I would increase the dose and she was happy with that, so I don't think she will be surprised. It has been a little alarming how much I have stiffened this morning - particularly the upper back and neck although I can still raise my arms easily. I hate this illness. My brain is a little foggy as well, or rather it feels as though it is floating along behind me. I think a rest is due. Thanks for your response - glad I found this site.
I recognise all of this. Don’t hate the disease, understand it and dominate it. As you are clearly beginning to do and yes, have a lovely guilt free rest.
Always remember that you arent reducing relentlessly to zero - you are looking for the lowest dose that works now as well as the starting dose did. It will fall over time - but maybe not as fast as the doctor thinks it should. However slowly you reduce the dose - you won't get past that dose at any given time. Being patient and marking time for a couple of months may get you lower - but when your body rebels repeatedly at the same dose it is telling you to hang on a bit ...
Thank you, PMRpro - this illness is a lesson in patience - perhaps long overdue. I shall listen to my body and see how it responds. Fortunately my GP diagnosed me over the 'phone after only two months and she seems happy for me to guide her on dosage rather than the other way around. I'm sure we all would like our steroid use to reduce as soon as possible but there comes a point where our bodies dictate to us. Another case of PMR has just been diagnosed just around the corner from me - I must give him this site's address - and his took much longer to diagnose so he has been suffering a lot longer.
Others have answered your immediate query, but please do have a browse through the FAQs - there’s more information contained in there than you ever thought you’d need to know😳..
And do tell your neighbour about the forum and get him to join the charity -
I shall certainly pass the Forum's details on to him. He's only just getting his head around it - mind you, sometimes I think I am the same even now.
There are many different ways of treating PMR, one method by Quick and Kirwan keeps patients on 10 for a year. Getting the optimum dose at a particular time is tricky and varies from person to person. Reducing too soon or too quickly often leads to flares and relapses. There is so much useful accumulated wisdom and knowledge on this forum to help and guide you. All the best
Many thanks, Tangocharlie - I shall search the site.
This is study tangocharlie refers to - rcpe.ac.uk/sites/default/fi...
Thank you!! Very kind of you and much appreciated.
Thanks, I've not been on here much recently and forgotten where I'd put that link!
Happens to all of us!
I think you should stop and let your body catch up. I have had PMR for ver 4 years and I tapered slowly, a lot slower than you, and got to 4 mg a month ago only to flare . I went up to 9mg and due to how I felt I am tapering slowly again. Good luck and remember you have to take what your body is telling you
I'm sorry to hear you have had a flare and, like you, I intend to taper very slowly once it is under control again. Good luck to you too. It must be disappointing to get so low only to have to increase again.
That sounds good,Koalajane - I think I will take it slowly from 7 mg and then stay at 5 if I get thats far for a while as well.
Just been reading all about tapering, withdrawal and adrenal insufficiency - phew! The AI might explain why I have had two or three episodes of low blood sugar since I went down to 7mg. Also poor sleep, aching back and shoulders and fatigue. Will talk to Dr about all this when she next calls. If I can stabilise at 7.5mg for a few weeks then I will try the alternate day decrease to 7mg and see if that is easier on the system. Thanks everyone for such positive responses and help.
Dorset Lady’s “Simple Taper” is worth consideration perhaps? Rather than a potentially jolting reduction there is a plan that reduces to new dose 2 days in week 1, 3 days in week 2 and so on. Week 5 is fully on the new dose (and I’ve found it helpful to pause at that point for an additional week to stabilise a bit). You can find this somewhere on this site.
Thank you, I shall try to find it.
You are at a critical point at around 7mg. Don’t rush it. It can take extra time as your adrenals adjust. It took me several months to get down 1/2mg at each stage beginning around 7. I am down to 3 and stuck here again. But don’t try to push through it more then a couple days. Some discomfort at first can be a normal adjustment but after a couple days bump your dose back up for a few weeks and then try again.
Thank you, cranberryt. I am beginning to realise it will take longer than I first anticipated. I had no problems down to 7.5mg but some bearable stiffness at 7mg and now stiffness and brain fog, interrupted sleep and a couple of episodes of what felt like low blood sugar although I don't add any sugar to the diet and eat low carb, wheat-free. One day at a time and thanks for your advice.
Having taken 7.5mg for three days I am still aching in the shoulders, neck, back and hips, particularly in the mornings, and suffering brain fog/slight headaches until later in the day. My GP says just let her know if I change the dose so I am wondering whether to stick it out at 7.5 or increase to 8 or 9mg - if 9mg does the trick then perhaps I can drop down to 8mg after two or three days. Sorry to ask so many questions - I should have stayed at 7.5mg much longer the first time I think, but the GP and I agreed to reduce .5mg/fortnight for a while which was obviously too quick.
Often you need a few days of adding 5mg to where the pain appeared just to clear things out, have a spring clean. In the end it often works better.
Thanks, PMRpro - it is kind of you to respond. I have emailed the surgery to say I am thinking of increasing the dose to 10mg for a few days but doubt I will get a response as it is the weekend - these things always do happen then, don't they? I shall wait a while to see if they respond. I take it the worse that can happen is that I will then have to reduce slowly from 10mg again - is that so? I don't what to yo-yo about with the medication. Thanks again.
No - you can take 5mg extra for up to a week to 10 days and drop back to the old dose without tapering. Though we usually suggest going back to a slightly higher dose - since mostly it is obvious the dose where the flare happened isn't enough.
Again, thank ou PMRpro. I was at 6.5mg although I could still feel a little stiffness at 7.5mg (very bearable, though). So perhaps an increase to 10mg for a week or so will be sufficient and then reduce to 8mg. I shall wait a little longer and if nothing eases try this. At present I feel stiff right across the shoulders and hips and down the spine as well - perhaps I need more exercise but haven't felt like it the last few days. I can raise my arms above my head, though. I will wait and see what happens.
Sounds a plan
Increased to 10mg today - battling it out at 7.5mg doesn't seem to be working. Fingers crossed this will ease things. I also have knee bursitis which restricts walking to very small amounts - any recommendations on other types of weight-bearing exercise appreciated. I finally have a physio appointment for the knee. I also see mention of steroid cards - should I be using one. So many questions ... sorry.
Weight-bearing is something of a misnomer. Even yoga can create the muscle/bone movement that encourages bone formation!!
Battling out at any dose doesn't really work - PMR punishes martyrs. You should have SOMETHING that indicates you are a long term corticosteroid user.
Another question - will they ever stop? Felt a bit better yesterday afternoon after the increase to 10mg on Monday. This morning I am struggling to get the head going and feel sooo tired. Also a little bit as though my blood sugar is low although I had a kipper and spinach for breakfast. Still a bit stiff but better than it was but it feels as though my brain is drifting about somewhere just outside me. Is this more like adrenal insufficiency? I have a physio appointment shortly so will head for the hospital - this is for bursitis of the knee and has taken months to come through - but I feel more like lying down on the sofa and drifting off. I don't seem to be able to deal with much in the way of stress.
When will what stop? The symptoms? Most people do get used to pred, the ones who don't are a small minority. And as you are able to reduce the dose things usually improve too. If there are specific things that bother you, ask in a post. Most of the pred effects can be mitigated or avoided when you know how. but many of us could write all day and still not answer YOUR personal question so ask if you can't find the answer in FAQs
Thanks PMRpro - sorry I meant will the questions ever stop. I will deal with whatever is happening as it happens which is what everyone seems to do. Regards, Miserere
The questions? That depends on you to some extent - whether you read, learn and inwardly digest as we said at school in my day and then remember. When you ask questions here you will notice that there will be trends in the replies - and worth taking note of them. There is hundreds of years of patient experience here.
I have probably been reading too much and that has thrown up more questions, because I am at that stage - everything for the first time. I shall stop reading now for a while and just deal with things. Thanks.
Hi Miserer, your story sounds so familiar to me and I would say you are where I was this time last year. I have learnt to listen to my body rather than 'professionals' who are giving text book answers on when to reduce and by how much. Originally, my Rhemy told me to reduce by 1mg every 3 weeks - but it just wasn't working for me and he wasn't the one living in a hurting body! So I started doing my own thing which included only dropping by .5mg and staying on the new dose until I was very comfortable (often 6-8 weeks). When I taper, I start with one new dose in the first week, then 2 in the second week, 3 in the 3rd, etc. All of these have allowed me to get down to 2.5mg which I will now stay on until after Christmas before considering another drop. If I am really uncomfortable, I do find Co-codamol really takes the edge off those pains in my neck, shoulders and spine - but I do realise not everyone gets on with it and it doesn't work for everyone either. My experience is that PMR recovery just won't be rushed - so I would advise you accept that this will take time and be kind to yourself by listening to what your body is telling you. Good Luck.
Thank you, Prof99. I am learning the same lesson as you and thank goodness for this website. The stiffness is beginning to reduce now at 10mg and I shall stay at this level for at least a week then see about reducing back to the last dose where I was painfree which was 8mg. After that I shall do a slow reduction, similar to the one you describe, and 1/2mg every time. I can't see the advantage to reducing and having to increase again - it will take just as long, if not longer. Hopefully my GP will agree.
Oh, dear, another flare when trying to reduce to 9mg. This time I am not going to mess about but will increase to 15 mg for 5 days-ish and then hopefully reduce back to 10mg where I shall stay until all stiffness goes. The third vaccine did not help either. Ah, well. It's all a learning curve.
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