Hi, and many thanks to all for the very helpful and informative information on this site. I am yet another newbie, trying to get to grips with understanding and managing this condition. I was GP diagnosed with PMR in September 2016 and started pred at 15mg. Miracle "cure" - within 2 hours went from behaving like someone in their 90s, hobbling around etc, to (almost) dancing round the room. Took GP advice about reduction programme, which she based on Rheumatology guidelines, though as I found my way to this forum I was increasingly sold on the slow reduction approach. Having tried it her way, and had to yo-yo with dosages, we now have an understanding I will do it my way in future.
I'm wondering about the best way to up the medication prior to further attempts to reduce. I was at 12.5mg for 2 weeks, with discomfort and occasional but bearable pain that didn't affect my mobility too much. My next step down was to 12mg, but after 3 weeks I am increasingly having pain so I need to increase again. My GP now suggests I go back up to 15mg and stabilise before trying to reduce again. To me this seems too big a backward step, when I was managing on a lower dose, and I was thinking of trying 13mg. My question is whether it is best to go straight to the higher dose (when it might not be necessary), or go up slightly and then go up again if necessary. What do people think?
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Patience_1
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I would always go for stacking it up and waiting to stabilise before beginning another reduction. The upwards creep just doesn't work - supposing you go up by 1mg and then stumble on something stressful (like Christmas) that 1mg is wiped out, so you go up another 1mg but now that doesn't contain the pain, so you go up 1mg more...........you get my drift?
Hit it hard. Be proactive. Waiting for it to hit you and then reacting usually cancels itself out.
I'm sure you've been told it before, but you will need plenty of it to get through this illness
However high you have to go really depends on high quickly you realise you were having a flare. If you catch it quickly you may only need to go up a mg or two, if it's really got a hold then maybe more. As you say you had some discomfort at 12.5mg then maybe that was just not enough, so you might find that 13mg won't be enough either.
I guess as you started at 15mg you probably went down to 12.5mg in one step, that maybe was too big a step too soon for you personally.
You could try 13mg, but if you don't get an immediate response in symptoms, then try 14mg - sometimes its trial and error, and difficult at the beginning. But as you go along, you will learn from your body when to reduce - and when not to.
One basic thing to think about for the future is the advice given not to reduce more than 10% of your current dose, so at 15mg that would be 1.5mg - so it's quite a good idea to drop by 1mg only between 15mg and 10mg.
Some people also find that staggering the drop over a number of weeks rather than overnight reduces the chance of a flare.
Hope you get back on an even keel before Christmas comes along, and bear in mind that that can be quite stressful, so get others to help you out, don't try and do everything yourself.
Thanks for that DorsetLady - and to polkadotcom too. I know it's trial and error, and I'm trying very hard to listen to my body - and, yes, the GP plan was from 15mg to 12.5mg to 10mg over 6 weeks. I had my doubts but thought I'd go with the flow first, and then argue about it in the light of experience. In fact, I think I'm lucky with my GP, and although she does have a tendency to want to stick to the "guidelines", she is more than willing to debate and listen.
My current issue is with alendronic acid - she thinks I should definitely take it, but I'm refusing at the moment and have asked for a dexascan so that I can make a more informed decision. Hey ho! It feels like my life has been hijacked by this condition and the need to learn all about managing - and pacing pacing pacing!
Am planning a quiet Christmas, and thankfully have good support from family and friends. I know really I'm very lucky - many are in a much worse situation.
Yep, think we've all been there. Very often it's just as confusing to the GP as the patient, so it's very often a learning about it together. That's why they very often are adamant about following the guidelines- but that's all they are - and as we keep saying everybody is different.
You will get to grips with it, but at the beginning we all find the "pacing" yourself strange. Trouble is, we're so used to doing half a dozen things at once that it doesn't come easy not too!
i really am inclined to agree with your GP about the going back to 15mg, get completely stable and THEN think about the reduction. The trouble is, once you let a flare in it can be quite difficult to get it under control again so it doesn't work pussy-footing about.
However - I agree with you about AA. Prove it to me I need it first. And there are other ways of increasing bone density besides chemicals - HeronNS is the resident expert on that having increased her t-score from -2.1 and being threatened with bisphosphonates to -1.6 and "no need for treatment" in a year!
Thanks PMRpro - will sleep on it and decide tomorrow. Point taken about needing to take enough to get it properly under control.
At 15mg (after I was diagnosed) I was pain free, with just occasional discomfort in shoulders/arms. At 12.5 I had occasional pain and frequent discomfort. At 10mg I had what I felt was an unacceptable level of pain. It's been a bit challenging for me to get an understanding of what I should actually be aiming for - pain free, or acceptable levels of pain that don't hinder my ability to lead a fairly active, mobile life.
As for the AA issue, I'm currently taking Ad-Cal & Vit D, Vit K2 and Magnesium supplements; and eating calcium rich foods and drinking milk. I also walk daily - having a dog is a big incentive! I may well come back for advice about any other ways of improving bone density.
The state you were in at 15mg is what you are aiming for - but at the lowest dose that allows that. It may be above 10mg at present - but it WILL get lower with time. The mistake most doctors make is to try to get you to stick to a predetermined schedule. It rarely works. Some people CAN mange to reduce 2,5mg at a time - but they are few and far between. They tend to be the people who will settle at a dose of perhaps 5 or 6mg for the long haul - they are nowhere near their Holy Grail dose. Others are very sensitive to the change in dose - and if you have pain that appears the first day or so of a new lower dose - it is more likely to be due to withdrawal than anything else. Make the step down small enough and your body is far less likely to notice.
BUT - and it is a big BUT: you have to do your bit. The pred only deals with the inflammation to reduce the symptoms. The real cause of the symptoms is an underlying autoimmune disorder that is making your immune system attack body tissues by mistake, not recognising them as "self". That continues and makes your muscles intolerant of acute exercise. You can still do things but it is a good idea to be good about avoiding or reducing the things that cause pain the next day or even longer afterwards. If you start doing these things in VERY small doses you will be able to build up slowly and "train" to do them again. But your muscles won't recover as they used to as long as the autoimmune process is ongoing. Some exercise is good, very good in fact, but not at a level that leads to pain. It means modifying what you do a bit - but it may not necessarily stop you altogether and you will get back there eventually.
I agree with your GP and PMRPro about going back to 15mg and stabilise. I find you can then reduce very quickly if things are OK to say 13mg and you do not need the slow reduction method for that drop if you have been on a lower dose previously.
Thanks again PMRPro, and to piglette, I think I will bite the bullet and go higher. I generally am being good about not over-exercising, and get no pain from a couple of half-hour walks daily - more likely to be floored by fatigue. Now, the ironing and vacuuming tasks are a different story! So, I tackle just one task a day - but ONLY if I feel up to it. Gone are the days when I'd stand at the ironing board for hours, or whizz through more than one room with the vacuum. As I've gleaned from the posts on this forum, there will be good days and bad, and too much activity has to be paid for in the days that follow!
The what and what????? I do the absolute minimum of both. If himindoors doesn't like it - he may do it himself or invite the cleaning lady to drop round...
I plan to do one major thing a day apart from working, which is at a desk eg shopping, going out to lunch, swimming, having friends round. Having said that today I delivered Christmas presents, posted and hand delivered cards, went shopping, bought petrol and went to pick up a Christmas pudding, perhaps I will have a glass of wine to sooth my nerves.
Sadly for me I am allergic to vaccuuming and ironing also cleaning, so am unable to do it!!! Ho ho ho.
In a way, it's quite nice to have a good solid reason not to do some of the things I've always hated or found tedious - if only I could home in on those and still manage the things that were fun!
Thanks for all the great advice and support, will let you know how I get on.
Your story sounds an exact replica of mine! I started on 20mg in April then reduced as advised by GP to about 12mg by July. All too fast as I discovered the hard way. An uncomfortable summer followed not quite sure what to do and it was only finding this community that really helped me understand what might be happening to me. Blood markers all spiked again and I went back up to 17.5mg in September. Am only now on 16mg using the dead slow method. Have had major issues with my shoulders and at my first rheumatology appointment three weeks ago I got a steroid injection in my shoulder. Gradually improving but still not pain free and unsure whether my shoulders are physiological issues peculiar to me or caused by inflammation from PMR. Thinking the former as the steroids don't eliminate the arm aches. Have seen my Physio and can do simple shoulder strengthening exercises but then feel I've been beaten by a stick the next day or so after so perhaps not a good idea. Can't do my usual exercises so its now dog walking for me too!
First rheumy appointment and he insisted I went back on the AA and omeprazole despite excellent Dexa scan results. I have done what I've been told probably because I feel I should but still have my doubts. He said we have to protect my bones for the future especially when on high doses of pred. Is 16mg classified as a high dose? I am also on Adcal Vit D and calcium. I take some herbal supplements too.
I am hoping I can continue the slow reduction method but it is very slow for me but not sure what else to do. I did get a follow up rheumy appointment for March but have just received a letter postponing it until September 2017!! I suppose its up to me to assess my own progress as I don't see my GP regularly or get bloods done.
I'm so grateful to all of you here as I get a lot of comfort from what I read and don't feel so alone. It is very difficult to describe to people how you feel physically especially when I've been known as the 'active' one always running around exercising and doing stuff! People still comment how well I look, so I should at least take that as a positive!
Split the exercises you were told to do into smaller bites and rest between - you will do just as much in 3x5min as in 1x15min (that's an example, I'm not saying do 5min at a time, you may need less to start with). But you have to allow your muscles much more time to recover from training than you used to. If you start with just one or two reps, rest, repeat, you will find you can do more without it hurting. The rest needs to be a decent interval though! It may take a couple of months to get to where you used to get in a couple of weeks before - but you have a new normal. That's how I built up to skiing, it used to take from early December to Christmas to ski every day for 4 hours, with PMR it took until early February - but I still got there!
What were your t-scores? It is being suggested nowadays that with a "good" result you should not take AA but reserve it for when you might need it. It has a few nasty side effects which are more likely to occur after a few years. Dental problems may happen relatively quickly so any extensive potentially necessary dental work should be done before starting to take it and scrupulous dental hygiene is needed while taking it.
There are several people on the forum who have been on pred for a few years without AA whose bone density has not changed at all or insignificantly. I took calcium and vit D, others took nothing and were fine. One lady has increased her t-score from -2.1, heading for but not yet osteoporosis, to -1.6, no need for treatment, in a year with exercise and supplements.
No, 16mg is NOT classed as a high dose, it is a moderate dose - over 20mg is high. There are people on the forums who have been on REALLY high doses, 40 to 60mg, for months who have had no AA and been fine.
If your t-scores really are good, I would request to not take it for 2 years and have another dexascan to see what has happened in the meantime. Discuss it with your GP - mine agreed with me about the up-to-date opinions of bisphosphonates not being the wonder-drugs that the pharmaceutical reps claimed! The bone built using AA may be denser - that doesn't mean it is less resistant to fracture and it can even fracture without trauma.
Hello Lochy, thanks for your response. I completely agree about the amount of comfort that's to be had from this forum. When diagnosed, I had a bit of discussion and a fact sheet from my GP, and if I hadn't then found my way to this site I would have been wandering in the wilderness not knowing what questions or points to raise. It's very clear the medics don't have all the answers, and there seems to be such a variety of views and approaches - how on earth is a lay person to make sense of it?! I found Kate Gilbert's book very helpful; and I've just ordered "Vitamin K2 and the Calcium Paradox" book in my quest to protect my bones. When I first started reading posts, I too was struck by how similar other people's accounts were; and isn't it good to be in touch with people who straight away know and understand all that living with PMR means.
I really do believe in as much self-help and determination as possible - as has often been said on this site, we are the only ones who truly know how we are feeling and responding to the medication (apart from the worry about losing bone density of course, which lurks beneath, unseen and unknown). I haven't been referred to a rheumatologist so far, and am happy to stick with my GP as long as we are working together.
Today I have made the decision to take the advice of the well-experienced members of this forum, and am back on 15mg, which was my original starting dose. In some ways this feels like such a backward step - or rather as if I've made no progress at all since diagnosis in September. But I suppose that's one of the things we have to learn - that this thing can't be rushed and almost seems to have a will of its own. On a good note, today I am feeling much better, so deep down I know it's the right move.
About your question as to whether 16mg is a high dose - I don't think so, from what I've read on this forum. Starting point for PRM seems to be 20 or 15mg; but much higher doses are prescribed for GCA (which I thankfully don't have).
Sorry to have rambled on a bit - just come back from dog-walking and for a change haven't collapsed into my chair for a nap!
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