reducing prednisolone

started with pmr 11 months ago aged 56 years. started on 20mg prednisolone with great reduction in pain within 36 hrs. I still have pain but the fatigue is the worst. Since then my prednisolone has been gradually reduced following results of esr. Went GP yesterday she asked how I had been, I hadn't been to good, aching and stiffness and of course the fatigue, and headache which I feel is coming from my neck. been referred to physio for this. however I was surprised when she said my esr had again dropped, so she reduced my prednisolone from 2.5mg to 2mg, bloods to be taken in four weeks. to be honest I felt like the prednisolone should have been increased because of how I had been feeling. the gp also said the quicker I get off prednisolone the better it is for me. i'm not to sure. I moved home in June and these are my new gps. Should my pmr be judged on esr levels?

24 Replies

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  • No - the primary consideration should always be the symptoms. The ESR and CRP readings are only an indicator and tend to lag behind what is really happening as well as being affected by other things. It works both ways of course - they may be raised but if you don't have symptoms that's fine, it could be a cold or a urinary tract infection.

    "the gp also said the quicker I get off prednisolone the better it is for me." - well yes it is, unless the symptoms return! The dose you are now at is VERY low and although it MAY be still causing some problems they are minimal. At this stage you should be reducing very slowly indeed - there is a basic rule that a reduction should not be more than 10% of your current dose to minimise problems. From 2.5 to 2 is a 20% reduction so although the dose is low, the reduction is relatively large.

    How are you reducing? Do you go from every day one dose to every day the new dose overnight? How often do you reduce? Do you allow a couple of months between reductions to be sure you are stable at the new dose? I take a month to get from one dose to a dose just 1mg less (I can't do less, I cannot cut my tablets), but if I try to go faster I have a return of pain and stiffness. After 10 years of PMR, 5 years of that on pred, I have managed to get to 4mg. I tried 3mg and pain in my biceps returned - it went again when I went back to 4mg. My GP is fine about it - she thinks even my dead slow and nearly stop reduction plan is pushing it!

  • When I have my blood test in four weeks the doctor said if esr reducing she will again reduce prednisolone. to me since pmr started 11 months ago, it looks as if they are dropping me to fast. what do I do if my esr is down but I don't feel well and the doctor tells me to reduce. doctors don't like being told what to do.

    thanks for your reply, do you know of any ideas for the fatigue and sleeplessness x

  • The medical literature says that about a quarter of patients are able to get off pred in 1 to 2 years. About half take up to about 4 or 5 years and the rest take longer. The group that get off pred in a year or so - whilst it sounds great - are at a higher risk of developing a second dose of PMR.

    Did you feel better when you were at a higher dose of pred? If so, at what stage did you start to feel less well? Unfortunately the fatigue is mostly not improved by the pred - the pred has no effect on the underlying autoimmune disorder that causes the symptoms we call PMR and it is that that causes the fatigue. For many people the fatigue never really goes away until the autoimmune part of PMR burns itself out. However, being in constant discomfort is also very tiring and if the PMR is flaring you are likely to feel worse and sleep less well.

    My first suggestion would be to ask to see a different GP in the practice and discuss it openly. Did you have similar problems being forced to reduce with your previous practice? If you had been under a doctor from the Bristol group you would still be on 10mg after 11 months! They find 6 weeks at 15mg, 6 weeks at 12.5mg and 1 year at 10mg reduces the rate of flares from 3 in 5 patients with other reduction patterns to 1 in 5 with theirs. This is a link to the paper they wrote - your GP might be willing to read it as it is aimed at GPs to assist them in the management of PMR patients.

    rcpe.ac.uk/sites/default/fi...

  • Hi, thanks for reply.

    My last gp before I moved home did want me to reduce quite quickly but after showing her the rcpe paper she took me down slightly slower. I think I felt better around 8-10mg apart from the upset of weight gain, which even since reducing prednisolone my weight has not reduced.

    I don't think im brave enough to stand up to the doctor, I think the reason being I used to be a nurse, she might think im a know it all.

    I really don't want a flare up though in the future. x

  • You have the choice - you can take the rcpe paper to the practice you are in at the moment and educate them or continue to head for a flare. It is NOT acceptable for GPs to think they know better than the experts in the field and you aren't telling them what YOU think but what the top people think who have seen far more patients than your GP has in order to come to their conclusions.

    Even the most conservative assessments of PMR admit it rarely burns out inside 2 years, as long as the autoimmune disorder is active you need pred or suffer the symptoms. In PMR it is never a case of reducing with the aim of getting to zero, it is to find the lowest dose that manages the symptoms until the disorder burns out - but many GPs think it is the same as any other illness where pred is used to reduce inflammation. This is CHRONIC use not acute.

    At less than a year, from the hundreds of patients I have met through the forums, I would expect you to feel reasonable at about the 8-10mg you mention. That is where the Bristol group would have you now. And apart from anything else, at this stage you probably feel tired because your adrenal set-up probably isn't back to working properly (not the adrenals themselves but the hormonal feedback system) and they are reducing you too fast even if the PMR were gone - which it sounds as if it isn't. Many doctors like to keep patients at 5mg for up to 9 months to allow that to settle down before reducing further - and I know one of the other top PMR/GCA consultants does that AND does not ever work on blood tests. He is adamant that it is the symptoms that you must go by because even if the bloods are raised initially they do not always rise in line with symptoms after treatment with pred.

  • many thanks for your excellent reply. I know your right I do have a choice and I would be the first to tell others the same.

    I will discuss this with my gp on my next visit. x

  • Isn't it funny how healthcare professionals will do and say one thing for their patients - but can't hear themselves when it applies to them? ;-)

    There is a post somewhere from a former GP who now has PMR - and boy, has her view changed!!

  • My gosh, I have been on pred for nearly ten months and have only just staggered down to 10mg and I was going to hang in there for a while as the last drop caused quite a lot of pain although I had picked up a bug which did not help. The fatigue recently has been bad, I think if the weather were sunnier and warmer I might feel a lot better.

  • thanks piglette, my body feels like I have reduced far to quickly x

  • I've been on pred for over three years now and am on the way to reducing to 6mg.... again! I had to go back up to 10mg when my GP didn't like the look of my blood results. But he went more by CRP than by ESR which my alternative medical adviser (my retired GP sister) agrees is the better indicator. I'm not going to have another blood test until I've got over a nasty bout of sinusitis which might give a misleading reading. There are so many imponderables in this relationship between the PMR and the pred, but I don't think ESR is more indicative than any other.

  • thanks annodomini, I don't think I have ever been tested for crp levels. it's unbelievable how pmr is treated so many different ways. some better than others. most of the doctors I see seem to worry about long term prednisolone. x

  • Hi there. I have had PMR for 10 months now and have been reducing at the instruction of my Rheumatologist. Now at 5mgs since August, but feeling on shaky ground ( I was pain free at 7mgs). I've had a horrible flare for the past ten days, and had a steroid jab yesterday to help me through (it could have been triggered by the flu jab). The strange thing is that my latest blood test shows my CRP and ESR are no worse than previously. Luckily my doctor took notice of my symptoms, as the test results don't always indicate what's really happening. I'm a big like you in that Pred reduction is always on the agenda, but for now I'm to stick at 5. Angela

  • Thanks angela, Its good to have someone to compare with. Who suggested the steroid jab, and how long does that last for. Im glad your doctor took notice of your symptoms and not blood tests. good luck with your journey with pmr. x

  • Many thanks. It just happened that my scheduled blood test and Rheumy appointment were coming up, so I took time off work and put up with the pain until then. So it was the Rheumatologist who suggested the steroid jab as he doesn't want me to increase the Pred at all. He says it should last for about six or seven weeks, slowly wearing off, by which time he hopes things will be more settled (I'm not so sure). I feel quite a bit better today (had the jab last night) except for my thigh where the needle went in is sore. I saw my GP a couple of days ago to get a sick note, and she said 'why don't you just increase to 30mgs'. I said because my consultant wouldn't like it. I don't want to start messing around with my tablets. I will see the Rheumatologist just before Christmas and he will review my meds. I take Methotrexate also for Rheumatoid Arthritis. I hope you get on OK. It's not easy is it? Angela x

  • xx

  • I started Prednisolone at the 60mg dose and after 20 months I am down to 5mg. My illness is GCA hence the high starting dose. My ESR did bounce up sharply once, so I stayed on the same dose of Prenisolone for a while. My GP suggested about six weeks ago that I try a wheat free diet. I am impressed with the apparent result. Before I became ill with GCA I had for more than a year an uncomfortable colon and piles. This was eased whilst on Pred., but not resolved by it. However, the problem has disappeared now that I have gone wheat free. Also, when I have dropped my dose of Pred my usual pattern was to have a period when I did not feel as well (generally felt not well and headache increased a bit). As the dose was reducing these periods of feeing unwell + headache were getting longer each time. This changed when I went wheat free. It took a few weeks to work but the period of un-wellness + headache increase is much shorter. I now want to continue with a wheat free diet. The choice of food is good in many places and supermarkets have a range of 'FREE FROM' foods in a set of shelving. There is also the record of someone on the PMRGCA site who suffered from PMR for 11 years with pain and who became pain free after going wheat free.

    If you decide to try wheat free and find out that it help you please let me know. Both PMR and GCA are complex illnesses so what suits one person might not suit another. The patterns of health problems with individuals vary widely. I know someone who had PMR, a retired medical medical consultant, who had PMR and who got stuck on a 2mg dose for a while. He has asked me to let him know how my wheat free trial is going. I would welcome any feedback from you or others with either disease as to how their wheat free trial goes.

    Just a short note on wheat. Wheat has undergone a lot of modification to produce a crop which is more satisfactory to farmers. When I have time I shall try to find out how the shorter versions with triangular stems (I am advised) are modified.

    I hope this helps.

    Richard

  • Hi Richard, I have heard about the wheat free diet. I think it can improve many illnesses. good luck with yours. mmm I wonder if it would help with weight loss to x

  • Hi Dillydally1,

    Reference weight loss, on the 1st January this year I decided to put myself on the 5+2 diet having researched the Michael Moseley book - made a lot of sense to me. I was a bit over weight and on the steroids I steadily put on more weight. The consequences of the weight gain and the adverse effect of steroids did not look good. I told my doctor about what I had done about 5 weeks after starting the diet. He fully approved of the 5+2. I have lost about two and a half stone and my weight is steady now (but an still on the diet which I now find very easy, especially as on the five days I can eat what I like. Food fancied on a fasting/restricted diet day can be had the very next day.

    Hope this helps.

    Richard

  • Hi Richard, thanks for that, I will look into it. well done on your weight loss, you have done great x

  • Hi Richard. I am really interested in going wheat-free as I've also had IBS for around 30 years on and off. Breakfast is typically cereal based, and a sandwich for lunch. Biscuits are my favourite mid-meal snack so you can see the pattern. I'm retiring in a couple of weeks so I'll have more time to plan meals etc. I'll let you know if I get started with this and how I get on. Angela

  • Hi Angela, In the past I have also had IBS. Thanks for offering to let me know how you get on with the wheat free diet. There are a couple of things which might help. I have for a long time made my own bread, sometimes by hand and sometimes with a bread-maker machine (Panasonic SD255 which has a convenient gluten free button and recipes in the accompanying book. You may also be interested in the book "gluten-free bread & cakes from your breadmaker" by Caroline Humphries.

    All the best with your retirement,

    Richard

  • I cut out gluten and also simple carbs when I started on steroids as I had heard that would stop the moon face and weight gain. It does seem to have worked but I may just be lucky. If I see gluten or simple carbs now it is like seeing something nasty!

  • Beware one and all of replacing gluten containing grains with "Free from" products. They are very calorie dense and they need a lot of artificial stuff to make them taste as good as normal. Gluten-free is NOT weight reduction food!

    Leaving out highly processed commercial wheat products is good - but as polkadotcom says, beware pre-existing conditions such as diabetes which require medication if you don't check your blood sugar regularly. Some doctors won't hand out the blood testing equipment and if you are taking a set amount of medication then taking away the carbs it is set for can cause problems

    Never mind making gluten-free cakes and biscuits - that is just the sort of food you should be reducing when you are on pred!

  • Can I please ask that all those considering a radical change to diet to make sure they have discussed it with their GP before starting it. As Richard has said, no two people are the same and a good many of us here have multiple medical conditions which need to be taken in consideration.

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