Sore in most places

I was diagnosed with PMR in May this year (2015) at 57. I was started on 30mg for two weeks, then reducing by 5mg a week until I reach 10mg, and the by 1mg a week until I could get to the lowest amount without pain, and instructed to increase 1mg if the pain returned.

I managed to reduce to 8mg with no ill effects, but upon reducing to 7mg, oh gosh did I get a reaction. I increased back to 8mg for one week and then reduced again to 7mg, and the reaction was even greater. I rang the doctor as mine was on annual leave and was told to increase back to 8mg and speak with my doctor the following week.

Not only did I get extreme pain in my neck, shoulders, arms, round my ribcage and hips, I was exhausted and just wanted to sleep, and had constant sweats that were coming one after the other, plus kept crying constantly. Not good when you are still working.

I spoke to my doctor on Monday and he said he could return me to 10mg that would sort out all the problems, but didn't want to do that, just wanted me to stay on 8mg for 5-6 weeks before reducing again. This is so confusing, especially after reading other peoples posts where they stay on a set amount for numerous months.

I have upped my Prednisolone to 9mg myself, which has sort of stopped the sweating a bit, the tears have stopped, thankfully, but the aches are there constantly and I feel tired all the time.

I do apologise for the war and peace post, but I feel it is the only way I can put everything down. Any advice will be gratefully received.

Many thanks

16 Replies

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  • Hi Lori,

    Sorry to hear your problems. I think your problems lie with reducing too quickly. It's all very well for GPs to give you a rigid programme to follow, but you need to ensure that the inflammation is kept under control. It's no good relentlessly reducing without ensuring everything is ok. You don't say whether you've had blood tests throughout the reductions, but even if you have and they seemed ok, they do not always work in sync with your body, so give a false sense of security.

    Once you've been on steroids for at least three weeks, then your own body has stopped producing cortisol, so there's no advantage in trying to reduce too quickly, you'll just end up in the state you find yourself now.,Why some GPs don't realise this I don't know.

    You can stay on 9mg for a bit longer and see if things improve, if not then up to 10mg , staying on whichever dose until YOU feel ok. Then, and only then, reduce slowly.

    Once I got to single figures I reduced by 0.5mg and over a period of weeks not overnight. So far, so good. Down to 4mg. Felt a bit iffy a couple of weeks ago, so I stayed at 4mg until things levelled out.

    With a slow reduction plan, if you feel ok when you get to the lower dose, you can go straight onto the next reduction. If you don't feel ok, then stop for a week or two. As your GP says you want to get to the lowest dose you can, but it's not a race!

    Everybody is different, so go at your pace, and listen to your body, it will tell you when to reduce and when not too!

    Hope you soon feel better.

  • Dear Dorset Lady

    Thank you so much for your response. Until I was diagnosed I had never heard of PMR and the only thing I heard about Steroids was not good.

    It's comical in a way, in that I have only just in the last few months been told I am no longer Diabetic Type 2, but on reading the information that comes with the Steroids one of the side-effects is it can make you Diabetic and also increase your weight. Well I will just have to be as determined with this as I was with the Diabetes.

    Once again, thank you so much.

    Kind regards

  • Hi again Lori,

    Yes steroids are a peculiar beast!

    If you don't know my story, I was diagnosed with GCA after 18 months of being treated for a frozen shoulder and after having lost sight in one eye. Fortunately 80mgs per day saved my left eye, but two years down the line I had raised glaucoma levels and a cataract in my good eye (now treated and good as new!)

    So what saved my eyesight also affected my eyesight! Best not to think about it too much! Take care.

  • Lori, Dorsetlady has already given you good advice. I really can't understand a Dr saying that although he knows that if you increased to 10mg that would sort out all the problems he doesn't want you to do that - it's more or less tantamount to saying that he'd prefer you to be in pain!

    Although I'm so sorry to hear how much pain you are in, it isn't at all surprising in view of how very fast you have reduced from 30mg down to 7. That speed of reduction was sure to let the inflammation run away with itself at some stage.

    If it was me, I would increase back to 10mg, and sooner rather than later. If you fail to get that inflammation under control it will put you at risk of other nasties, not least the linked condition GCA which could put your eyesight at risk and which needs an even higher dose of steroids to control it. I know - Consultant and GPs failed to diagnose my PMR for a year, by which time I succumbed to GCA. If 10mg works, then you need to remain there for a good couple of weeks before reducing, and then by much smaller decrements than previously, remaining on each new dose for longer.

    If you haven't already read it, I and others can thoroughly recommend the book by Kate Gilbert, a past sufferer of PMR and past Chair of our National Charity, PMRGCAuk. It's called 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' and is available on Amazon or direct from the Charity pmrgcauk.com, with all royalties from the sale being donated to PMRGCAuk.

    Do come back and let us know how you get on.

  • Thank you so much Celtic. Its so nice to have some expert advice, which you both are having had it a lot longer than I have, being a PMR virgin so to speak. Will start on 10mg tomorrow and see how I react over the next week or so.

    With kind regards

  • I was diagnosed early March of this year starting at 20 mg and am still on 12.5mg slow reducing is working well so far

  • Lori I am so sorry you are in such pain. As the others say that is an incredibly fast reduction. I have a friend who had PMR several years ago and his advice was, below 10mg only reduce .5mg a month maximum. He never had any flares he said and he was advised by a really good rheumatologist who has now retired sadly. I think doctors go for gold on getting us to reduce as they seem totally paranoid about the side effects of steroids. You don't want to go up and down with your dose, that is not a good idea, it is much better to go down more slowly.

  • Thank you so much Piglet. Everyone has been so helpful and its nice to know support is out there when you step into the unknown.

  • Hi Lori, I read your post with absolute disbelief! I was diagnosed with PMR at the end of December 2014. Started at 30mg for 3 weeks, and am now moving from 10 to 9mg via the "dead slow nearly stop" method. Throughout, I have followed advice from this forum- in particular from Dorset Lady, Celtic and Volunteer. I have so far experienced no flares or returning of the original painful symptoms. Seems to me you have been advised to reduce by too much, and much too quickly.

    Really sorry to read of your problems, and hoping you feel a bit better very soon.

    Good luck.

  • Thank you Charlie I think I now agree with you slower has got to be better and as mentioned in my response to Greenheath's post I actually felt a little better today after upping my Pred again.

  • Lori57

    You might like to purchase 'Living with PMR&GCA' produced by PMR&GCAuk North East Support, Charity Reg 1138409 the cost is £5 which all goes to the charity. pmr-gca-northeast.org.uk

    greenlander posted this 2 months ago

    "Have just read "Living with PMR and GCA", a new booklet by North East Support

    It really is superb - a book for patients written by patients who know what sufferers are going through and what they need to know.

    Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago.

    I do hope PMR&GCA North East will be able to make it widely available. Worth whatever it costs."

    KNOWLEDGE IS POWER.

  • Thank you Sambucca. You are of course correct knowledge is power. I will definitely be giving that book a try. Have read the Patient UK leaflet that the GP supplied but it is very technical in its approach with limited personal touches.

  • The one thing we can guarantee is that it is not technical, neither is the DVD the North East produced called 'You are Not Alone'. That was made because trying to explain about an illness that nobody had ever heard of, you look well and family, friends and carers were baffled, never mind the patient. The DVD has been sent out to patients, not only in the UK but outside the UK, the States in particular.

    The medical people who got involved admitted afterwards that they had not realised how much jargon they used as when they brought their scripts to the filming day, they were told - no no, I am the lowest common denominator and if I don't understand what you are saying nobody else will. There was much laughter that day.

    We had found that all the 'stuff' on offer was too technical so they are all designed to act as if someone was just sitting talking to you as a friend, and if that friend happened to be me, even I could understand it.

  • Hi Lori

    My goodness! Your reduction in Pred has been so very rapid. When you refer to your 'doctor' is he a GP or a consultant Rheumatologist? I've never heard of anyone reducing their Pred intake so rapidly. I'm not surprised your pains returned and you've suffered additionally with such tiredness and depression.

    I've spoken with so many people, both on this site and in person, and everyone I know, including myself, has been instructed to take things a lot more slowly.

    As you only started three months ago, I would suggest you'll have to accept that the process will be a more drawn out affair. Not much fun, and you will probably have other side effects, as most of us on this site have had, but I don't think you can expect miracles after only three months. PMR recovery isn't rapid and taking steroids is ghastly, but it does go away eventually, I'm told. I look forward to that day and in the meantime I keep taking the tablets!

    Greenheath

  • Thank you Greenheath and to everyone else who has taken the time out of their busy days in order to reply to my woes. I took Celtics advice and upped my Pred to 10mg today and also took some Solpadeine which by lunchtime I was beginning to feel a bit better after having extremely bad lower back and hip pain and struggled to wash and dry my hair this morning. Only one short flush today which is easier to deal with.

    I am only being treated by my GP and have not been referred anywhere else.

    Think I will stay on 10mg for a while because today is the best I have felt in such a long time. Thank you all x

  • So pleased you are feeling a little better Lori. I was diagnosed with PMR & GCA 6 weeks ago. (most probably PRM undiagnosed for total 5 years and had GCA for possibly 2 years latterly), so first 2 weeks on 40mg preds, PRM totally pain free within 48 hours, Some GCA pain, reduced to 30 mgs for a further 3 weeks, all pain now gone, now reduced to 25mgs and will stay on this until reviewed again by consultant (a few face pains today). Honeymoon period of steroids now gone, and have the usual side effects, tremors, palpations and moon face .... this list goes on. BUT I am pain free and it would now be extremely unlikely for me to lose my sight, so I keep this in mind.

    I asked my consultant what does he thought I would be on by the end of my first year, he suggested 20mgs. Which was disappointing, but the tapering apparently is all important. I am hopeful maybe I could be a little lower by then?!?

    I wish you well in your journey, which like most of us seems to be a long one - this being a condition I had not even heard of 2 months ago!

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