Reducing Pred Advice please

I was diagnosed with PMR in October 2015 and was given 15mg Pred.

I have now tapered down to 4mg with GP's advice ( I have been on 4mg for 3 weeks). I still have PMR symptoms around 6am every day.

I take my Pred around 8am and after a warm shower the shoulder pain and hip ache starts to go and by 9am it has gone.

I would like to taper further but I am not sure if or when I should do it.

Also, I find that if for example I swim in the morning (3 times a week) I am fit for nothing for the rest of the day. Am I overdoing things? I really enjoy swimming though. Thank you Cassie

31 Replies

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  • Hi Cassie,

    Couple of points I would make -

    If you have pains around 6am then your daily dose is not lasting 24hr. If they really cause you problems then you could try splitting your dose taking some in morning, some at bedtime, usual recommendation is 2 thirds am/1third evening approx. At 4mg I would try 2.5mg/1.5mg, or 3mg/1mg

    You could try taking your full dose around 2 or 3am if you can bear to be woken up then, and can get back to sleep. That means that the Pred is in your system in plenty of time before the cytokines are produced around 4am.

    If they don't cause too much problems, and you say you are okay by 9am, then personally I would just live with it. So long as they don't get any worse.

    Think you may be doing too much on your swimming days if you are left shattered for rest of day. You cannot do any exercise as vigorously as pre -diagnosis/pre-Pred. That means no more olympic level, more holiday front crawl! Of course it could also be your adrenal glands not working as well as they should be yet. That's just a matter of time!

    Try some of the above and see if they work before you start thinking about reducing. No point doing it if you are not sufficiently pain free. Plus when you do, if you aren't already then try slow tapering plan and 0.5mg a time.

  • Dorset Lady

    Thank you lots to think about and I may consider splitting in to 2 doses- how long should I try that for do you think? I feel that is better than waking up in early hours.

    Maybe after I swim 3 mornings a week I should just accept that I don't do much for the rest of the day.

    Today I had cold food until 5pm and felt quite sickly until I had a hot meal - do you think that is to do with PMR as I often feel like that.

    Regards

    Cassie

  • Hi again,

    I think if the splitting of the dose works most people stick with it, but you should notice a difference within a week or so. Quite agree with the waking up at 2am, I tried it for a while but too much hassle!

    If you really enjoy your swimming, then stick with it, but as I said take it relatively easy, and if you don't do anything else the rest of the day then does it matter?

    Not sure about hot or cold food, I don't usually have anything hot until the evening apart from drinks and didn't notice any difference during GCA. Just so long as you have something nutritious I don't think it matters. One doctor once said, so long as they are nutritious, sandwiches are just as good as a hot cooked meal!

    As for your question to PMRpro, my adrenals were a bit slow in getting to work again, but they did eventually once I got to about 3mgs. If you are really concerned about them you can ask for a Synacthen test to check that they are capable of working, it doesn't confirm whether they are working, just capable of doing so.

  • Thanks again for useful advice

    Cassie

  • DL has said it all really. Most people have early morning pain and stiffness but if you are taking your pred at 8am and are OK by 9am I don't think that is too bad.

    It may be your adrenal glands are lagging behind your reduction a bit and while you have enough steroid in your body for most things, the amount of exercise you are doing is perhaps a bit too much yet. Was it better at 5mg? I wouldn't rush to reduce further for a little while - one top PMR doctor likes to keep patients at 5mg for several months and he finds that makes the rest of the reduction go more smoothly. 4mg is a low dose and really nothing to worry about reducing from in too much of a hurry,

  • Dear PMRpro

    Your reply much appreciated . I think I will stay on 4mg as I understand what you and Gps say. Regarding exercise it's been the same tiredness on 5 but to swim is good for me so I put up with the tiredness.

    Adrenal glands- please can you reassure me that as I reduce gradually the glands will start working again- I feel a bit worried about this aspect of reducing.

    Thanks

    Cassie

  • I can't reassure you that they will definitely wake up - except to say that there are few people for whom they DON'T wake up as long as you reduce slowly enough. If you continue to reduce without giving your body a chance then they won't keep up. But for the vast majority it isn't a problem.

    Can you do more days of less swimming? It's pacing that deals with the fatigue - if you overdo it, then you will be tired, it's a simple as that. You have to achieve a balance.

  • Thanks and well stated about the fatigue and a balance- it's simple as you said so I need to take stock.

    Re adrenal glands, I would like to know as I seem to manage on 4mg from 15mg 18 months ago- dors this mean adrenals are kicking back in to action as I improve?

    Cassie

  • Almost certainly - for most people they do as long as you don't try to rush the reduction at the low levels.

  • Thank you- your encouraging words helped- its 8pm here and relaxing in my reclining chair- where would I be without it !!

  • Dear Cassie, I love swimming too, but I can only manage twice a week and find I need to rest the following day.

  • Hi Piglette

    Thanks for your reply, yes I am the same as you having to rest the day after. Although I am tired after my swim, I feel it does me good.

    Cassie

  • Hi Cassie

    I always feel better after a swim too.

  • Hi Piglette

    I feel very hungry after a swim!!!

    Cassie

  • Hi Cassie

    I always have a coffee and a biscuit or two after a swim, then relax and read the newspapers. Very pleasant.

  • Hi sounds good- how long are you in the pool- half hour is enough for me!

  • I do just over half a kilometre each time, so it depends how much I chat each end of the pool!

  • I am impressed that you have the energy to get across the pool!

    With PMR there is often a lag time. You do exercise, or some task, and then later crash. Your body just doesn't signal you, at the time, that you are beyond what it can physically handle. That is why we all learn to slow down and pace ourselves.

    Could you cut your distance in half? Or slow your pace? It's pretty common to be exhausted with PMR, but this might help you find the amount of swimming your PMR body can handle at the moment.

    I am happy to be back to dance aerobics after being off for 2 years. Even now I have to do it at a lower level -- smaller steps, less hopping, dropping my arms down If I sense they are fatigued. I will work back up to normal level over time.

    Good luck!

  • Thanks for your reply and for simplifying the situation. It's so true that I don't feel it at the time of exercise and I crash suddenly afterwards. I have decided to take your idea of slowing pace and just relaxing more on the water. I feel swimming does me good 3 times a week just for half an hour each session but then I travel by bhs and this can be tiring.

    It must be an achievement for you to return to dance aerobics after some time.

    Cassie

  • Hi again Meg

    How long have you had PMR? Just wondered as it's been 18 months for me. I went to a local hospital to do research on to PMR as they are having a roadshow based on volunteer research so I hope to find out more.

    I find for example if I go out in the morning can't go much else for rest of day- it's hard to accept but I am learning to listen to my body.

    Cassie

  • Hi Cassie,

    I was on pred for 27 months, but probably had PMR for a year before I started pred. I was just able to get off of pred 10 days ago.

    Yes, my energy level was very limited and I could do only one outing/errand per day. Leaving the house to do anything seems to take extra effort with PMR. Social activities also take more energy, and I limited myself to get togethers with a few good friends and avoided big groups. I learned to slow down and pace myself. I might do one chore around the house for 15 minutes and then lay down for a few minutes to let my body recover - like plugging in your cell phone to recharge! I found laying down helped much more than sitting and I could read, watch tv or check email etc on my phone while laying down.

    Listening to your body is definitely the key. You learn to dance with PMR rather than fight it. It is hard to accept that you cant do as much in a day as you used to. I was fighting it at the beginning, but after being on pred about 10 months, I decided to quit my part time accounting job, because I just didn't have the energy or clarity of mind to continue. That was when I think I started to get better, when I accepted the need to drastically change my expectations for what I could do in one day.

    And, your energy level does start to pick up again. Actually, after a year off from my part time job, I did take it back again last October and am doing fine with it now.

    Take care.

  • Hi Meg

    It's interesting about you having PMR way before diagnosis, I feel I did too with neck and shoulder pain and had injections etc but since taking lred all that went. You must be over the moon with coming off it even though it has been long drawn out. Actually being only able to do one thing a day re work, socialising etc is only just been accepted as I found it irritating and still do but learning day by day to deal with it. For example I worked as tutor support this morning and now I am tired and will rest this afternoon. Also some people don't understand and reexplaining has to be done! yes my reclining chair is my favourite place by far!!!!

  • After reading through this thread, here are my thoughts. My reduction has been similar to yours. I was down to 4 mg last May (2016), having started at 15 the previous June. I'm now at 2 (rather precariously but so far so good). So you can see, it's taken a very long time. Reductions by .5 at a time, and sometimes having to make more than one attempt, using the dead slow nearly stop method. Fatigue and pacing - make sure you have as much rest time as you have activity time. On your swimming days, do not do anything else. That's the day for easy meals and no other household tasks, for example. I wondered about my adrenal glands too, but there are the occasional days now when I feel quite energetic. The first time it happened I was quite stunned as I'd completely forgotten what it was like to feel that way. Hopefully these episodes will increase as time goes by, and I'm hoping the end of winter will help!

  • Thank you for your helpful comments- especially now I realise it's not just me when tiredness sets in and yes on swimming days I don't feel like doing anything else but relax sometimes I am too tired even to talk and need my own space. Interesting to know about your tapering and how you got on. Some days I feel how am I going to get through going to work(only work 3 mornings) but when I get ready and go I feel good when I am there - it's just thinking about it that causes me stress.

    You are doing very well indeed and it's inspiring!

    Cassie

  • I had my first attack of PMR in July 2015. I have been down to 15 mg. pred. and had a flare up, went back to 18 for 4 months. I started going down and got to 8 and then had another flare up. Went back to 15. After 2 months, went down slowly and never felt anything until I got down to 1 mg. last week, the Dr. put me on Curcumin with pepper, I take Nettles brand 1200mg. Turmeric root with black pepper.

    I believe that this has helped me get down to 1 prednisone. Today I got a real pain in my right hand and wrist. Cannot move my fingers and hurts to touch. I am hoping that this will disappear soon. I just wanted to share this as if I can just continue taking the Curcumin, I will be very pleased.

  • Thank you so much for sharing your health food knowledge - I am going to look for those. Please can you confirm what you take every day.

    Should I ask for turmeric root with black pepper also circumin with pepper?

    Regards

    Cassie

  • Before taking ANY supplement you need to check with your doctors or the pharmacist for any contraindications. I can't remember where you are - but I can't imagine any UK doctor handing it out.

    Turmeric root contains curcumin - they are effectively the same thing.

    Some people have been unable to take turmeric as supplements as they upset their stomach, others use turmeric in cooking which is probably equally as effective and with fewer side effects.

  • Thank you PMR pro for your advice- I am in UK and GPs would not prescribe health food supplements.

    I am taking rosehip and didn't think of checking do will do so.

  • Not only would UK GPs not prescribe supplements - they would be unlikely to even suggest them!!!!

  • It is Nettles Brand , 1200mgs. Turmeric Root Extract (Curcuma Longa)

    Turmeric 95% Curcuminoids 100mgs. and BioPerine (Black Pepper Extract) 5mgs.

    This was recommended by my Doctor who is very recognized.

  • Thank you!'

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