Pain

I hope I am not writing too often but am trying to find a good place and how to manage prednisone and pain. On 15 mg for 3 weeks in split dose (10 at 0700 and 5 at 2100) Go to bed with pain and wake up with it. Is that what I should expect?

Yesterday I decided to try taking 10mg at 2AM and 5mg at 4PM. Went to bed with difficulty moving my arms and shoulder pain, took 10mg at 2AM and today the shoulder pain is as severe along with stiffness in hips. Do you think I should increase the dose or get used to this? Continue with split dose, go back to once daily. I am asking for guidance. This group (thank you) is my main resource in learning how to cope with and what to expect from this new journey.

18 Replies

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  • Hi barbthy,

    Of course you're not asking too many questions - that's what we're here for. No point in suffering in silence if someone can help.

    Many people wake up with some pain and stiffness, that's why a recommendation of splitting your dose is suggest so that you have some Pred in your symstem when the cytokines are produced around 4am - they are the substance that cause the problems.

    I had GCA so never split my dose, so can't really comment on whether it's better or not - it suits some, but not others.

    What I would say is, might be obvious but,

    A. the overall dose is not high enough for your present situation, or

    B, unfortunately you are one of the people whose body doesn't process the Pred as well as others, so you are not getting the full benefit of your 15 mg daily dose, or

    C. your dose does not last 24hours (which is why the split dose is suggested).

    After being on same dose for 3weeks would have expected more improvement than you describe, so can really only assume not enough Pred, or not PMR. The only way you find out if it's not enough Pred is to increase your dose, but you should run that past your doctor first. Appreciate that the weekend is nearly upon us, but maybe a phone call to surgery might be in order, or failing that NHS helpline.

    Please keep us informed - and don't suffer in silence!

  • I have GCA as well. I don't split prednisone dosage (now down to 8mg). Not sure if there is any benefit in splitting it. My CRP reduced in a few weeks from 76 to 4. We had a celebration over that! As a mid-septuagenarian, I have stiffness in the morning or after a period of inactivity. I do like Mario (my cat) does, have a good half a minute stretch before launching into stride. Works.

  • Hi sondya

    Not recommended to split dose for GCA, especially early days when in need the full dose of Pred to control things. I did try on much lower doses when trying to get adrenals to spark, but only for about a week - did nothing for me either!

    As you say, normal stiffness comes back as you get to lower doses, never mind the age!

    Cats are very good role models!

  • Mine thinks he is a dog. Follows me everywhere. He is my daughter's cat but I got stuck with him when daughter moved into an apartment block that banned animals. Not that I mind. He is a lunatic! But friendly and cuddly.

  • Cats can be the best companions when you just want to chill and maybe nap or do nothing much. They will not usually be pestering you to take them for a walk, although one of ours does like to have one of those rubber bracelets thrown for her to chase and then she attempts to kill it, which provides endless amusement for the cat, but gets a bit old for the humans rather quickly!

  • Texted GP and he upped dose to 40mg for 3 days then 20mg for 2 weeks and then try going back to 15mg.

  • good but he seems to be intent on reducing far too fast. I started at 15mg and after 2.5mg went up and did it 1mg a time for 4 weeks. by time I got to 10 was .5mg and that's for PMR . see DL post from yesterday 're GCA

  • Good response from GP, hopefully the 40mg dose should get a grip of things - which obviously the initial 15mg didn't.

    Two weeks at 20g should then cement that work, but I would be inclined to then go down to 17.5mg rather than 15mg.

    Your body will have got used to 20mg after 2 weeks, and may not like the drop down to 15mg, it's quite significant (25% as appossed to the 10% taper widely recommended), so it may rebel! 20mg to 17.5mg is 12.5% drop, so theoretically easier.

    Please let us know how the increase is, and of course, as stated, if things deteriorate any more then seek attention ASAP, but fingers crossed the increased dose will address the problems.

  • Yesterday was first day with 40 mg (split) and it was great, first pain free day, even went to baseball game with friends last night. Ate too much, beer, popcorn and ice cream but it was worth it. Back to diet today

  • Have you tried taking the 15mg in one morning dose or 2am dose to see if full dose makes any difference rather than using split dose. if you can't get ok for increasing to say 20mg why not try 15mg as full whack. here's hoping you can get gp support and see if increase helps pain and dx of PMR.

  • That worked for me!!

  • No-one is counting...

    My immediate thoughts are:

    1) you simply aren't on enough pred to start with - and MAYBE you are trying to do too much. The pred is just aimed at the inflammation - it does nothing about the real underlying illness and so you muscles are still being attacked and remain intolerant of acute exercise.

    2) Maybe this isn't PMR. But you would have to try with a higher dose of pred first before coming to that conclusion.

    Did you get a noticeable improvement in symptoms when you started the pred? I'd like to say 70% improvement overall - but if you aren't on enough, that isn't likely. For example, with 15mg I got a really good result for the muscle pain and stiffness - but the hip, hand and foot pain I had took a lot longer to go away.

    Many people won't achieve total freedom from pain. But it should be better than it sounds you have experienced. If it isn't helping noticeably - it begs the question why you are taking it at all.

  • hi barbthy

    Just looked back on your posts. it looks like you were better on 20mg so as others said on that thread perhaps you are reducing too quickly for your body. hope you get some relief soon.

  • Ah - didn't have time to look!

    Yes barbthy - if you were not too bad on 20mg and then dropped quickly to 15mg the most likely answer is you have dropped far too quickly.

  • Hi Barbthy, as a newbie recently diagnosed you will have lots of questions and the beauty of this community is that no one on this site keeps a count! Nor is any question too trivial not to warrant a response!

    As you are aware I was diagnosed at a similar time to you and also had a scare recently similar to yours.

    I was fortunate to have the 'miracle' response to pred at 15mgs. But since this time my Rheumy too has wanted me to try to go down in one step of 5mgs to 10mgs alternating doses over two days 15mgs / 10mgs. This was too much too soon destabilising my body which reacted with increased aches and pains so, after posting my dilemma on this site took the bull by the horns and tried alternating 15mgs / 12.5mgs instead.

    Having said this my increased aches and pains at the lower dose is more an inconvenience than the severity of your reaction to a decrease of 5mgs from your starting point.

    I tend I agree with the others that perhaps you are trying to reduce too quickly too soon, as your current symptoms sound similar to mine pre diagnosis and pre pred.

    Alternatively you could try the 15mgs at one hit. I take mine at 9am ish and it kicks in about 11.30am. I have not tried split dose is there a reason you do this?

    If I were you, given your description and severity of pain and stiffness I would go back to your starting point where you were more comfortable and then, once stabilised try a smaller decrease of 2.5mgs and see where that takes you.I did this then informed my doc. He seemed to think this was a sensible approach and so far so good.

  • Most likely you are not on a high enough dose. But if your not get any relief then it may not be PMR.

  • Hello barbthy, it does sound like you are in more pain than you should expect when on a pred regime. I looked back at your posts and can see you have been struggling to get to the right level of pred and when and how to dose, etc, and that must feel miserable - especially when you hear others talk about the "miracle" of this medicine.

    I have found it's very much a case of trial and error, so trying, for example, to split your dose might be a good idea, but I think it's also important to stick with one way or another (and try minor adjustments) for a while, to find out what really is the best way for you. For the same reason, reducing in very small steps allows you to find the right dose for the amount of inflammation that you have.

    One question - some days ago you told us you were getting headaches, and I'm wondering if you managed to get them checked out? Or did they resolve? It does sound as if you may not be on enough pred to control your inflammation symptoms at the moment, and if there's a possibility you may also have GCA then your dose will be way too low. If you have any worries at all that it might be GCA, don't hesitate - get yourself check out straight away. Eyesight is far too precious to risk damaging. Please don't feel that you're being a pest with lots of questions or demands - these can be difficult illnesses to manage and, while the medics have varying degrees of knowledge and interest, only we know exactly how we are feeling.

  • I am no expert, 15months in but started at 20 mg and am headed to 4 currently on the DSNS method. My primary care physician always just said to me, we want to maintain a dose where the symptoms are kept at bay, so in my opinion your dose is too low. I started at 20 and had pain in the am so split it 10 at 7 am and 10 at 4pm, I didn't want to have too much trouble sleeping. I dropped to 17.5 after a couple of weeks and continued to split the dose. I stopped splitting the dose once I got to about 10mg. Keep in mind everyone is different, but the whole idea of the pred is to STOP the pain so you can start to live again. It looks after the symptom while the disease runs it's course.

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