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1 week on the Pred feeling much better but still have some pain

Posted , 14 users are following.

michelle06123
michelle06123

Good day,  PMR is very new to me and I have completed my 1st week on Prednisolone. I have saved many of your useful posts into a folder whilst learning to understand more about PMR. I am on 15mg which I take each morning and it has largely reduced much of my stiffness and pain though my wrists hurt most days but that could be agravated by driving and my job,  I wake most night with leg aches and the pain seems to return to most joints early morning and then subside sometime after the meds are taken. So mornings are a problem So have to work from home mornings then drive into work in the after noon. I see a new rhumy next week after my awful experience with the first. Is it still early days to still have pain during the night/early mornings? Or does it take a little longer depending on the person to be completely free of pain? 

2 likes, 15 replies

15 Replies

  • TheRaven
    TheRaven michelle06123

    Posted

    It sounds like your metabolism level might be burning up the prednisolone more quickly than 24 hours, so you "run out" of pred before taking your next dose in the morning.  It seems like there are quite a few people on here, myself included, that have to split the dose.  For yourself, it might be taking 10 mg in the morning and then 5 mg 12 hours or so later.  The total dose is still the same for 24 hours but it's spread out a bit.  It made a big difference for me.  It gets a bit interesting when you start reducing the dose over time but for now your focus is what will keep you relatively pain free constantly.

  • Royall
    Royall michelle06123

    Posted

    Hello there. I started on 15mg of Pred and it took 3 weeks until I was pain free I am now on 12.5 mg and all is good. I hope that you will soon be pain free as well. 

     

  • BettyE
    BettyE michelle06123

    Posted

    Or does it take a little longer depending on the person to be completely free of pain? 

    The most relevant bit of your post is  " depending on the person". Absolutely it does in everything to do with PMR  ( and, come to think of it, most aspects of life ).

    You obviously have great hopes of this forum and, as a long time user, I am sure they are justified. It won't matter what you ask you will receive answers that will vary from person to person.

    I have had PMR twice The first time I was pain free within four hours. That is not an exaggeration, it's literal truth and others on  here will confirm that they had the same miracle result. But the second time, although I was comfortable within a week, there were niggles most of the time and it took much longer before I reached the stage of being able to taper the steroids to nil.

    It just happens that my sister has been diagnosed about a month ago. She, too, was started on 15 but her GP has increased it to 20 as she was still experiencing a good deal of pain. He did follow up blood tests which showed her inflammatory markers were even higher than at first and I think that was the deciding factor in increasing the dose. He has told her to stay on 20 for a month and then reduce to 17.5 and see what happens.  Have you told your GP about your pain levels? Sorry about you bad experience with the Rheumatologist. Many of us including me were managed by our GPs and a good relationship is everything.

    I am sending you a PM with the link to the NHS information my sister's GP gave her.  ( Can't put it here as links to other sites have to be moderated. ) I think it's pretty useful info. for the newly diagnosed.

    Best of luck. Keep coming back; there are lots of people who are happy to share information and experiences and it does help to feel you have friends who understand.

  • nick67069
    nick67069 michelle06123

    Posted

    It took me more then a week for pain to completely go away, so it is not unusual. Some start on higher dose, and it may work faster. In your case, since you work, it may take longer then a week, and/or you may require higher dose. It all depends on kind of work you do.  If it is physical or stressful, it may require more pred.

    As far as morning stiffness, I find that splitting the dose works better for me. I have experimented and found that the best time to take pred for me is very late at night ( 1-2AM) and when I get up about 8 or 9AM. Evening dose takes care of morning stiffness. Also what helps is to gently stretch area that you have problem with to increase blood flow. If you have time, quick 15min walk would also do the same.

    I hope that helps.

    • michelle06123
      michelle06123 nick67069

      Posted

      Thanks for all the good advice, I will discuss with the rhumy about what he thinks about splitting the dose and maybe I do need to give it a little more time. Incidentally I seem to have 5mg less than I should have to last me until I see  the rhumy on wed.  So on wed morning I can only take 10mg.  I wish I had checked them all at the time I got them. 
    • michelle06123
      michelle06123 nick67069

      Posted

      Thanks nick, I work as a H&S/ Facilities Manager so I do a lot of keyboard work when I’m working on procedures  which I’m trying to manage but the other side of my job keeps me not sitting down keying for too long as I’m up and about a lot. But my car doesn’t have power steering and I think that’s not helping.  So may look at public transport for a while until the pain is under control.  Yes. Do tend to stretch out my legs particularly when they ache so bad in the night that helps but hurts too if you know what I mean. I’m trying to take things easier  for the moment as aware I can’t do things quite at the pace I was used too before this.  I did my first full day this week at work but It wiped  me out the next day and I couldn’t make it in work but thankfully they are supportive at work until I adjust to the meds / condition etc. 

  • mary19068
    mary19068 michelle06123

    Posted

    Hi michellle06123

    It took 2 weeks + on 15mg pred for my pain to abate. You will find on the forum an expression that is used quite often.."We are all different" and that is true we are with PMR and preds...keep taking 15mg for another week or so and you may feel a difference by then....hope you reach your comfort zone soon....

  • EileenH
    EileenH michelle06123

    Posted

    The inflammation is caused by a release of substances in the body at about 4.30am which happens every day as long as the cause of the disorder is active - that's why you have morning pain. The earlier after 4.30am you take your pred, the less it has to do to combat the pain. 

    And yes - your work WILL impact on the pain.

    • michelle06123
      michelle06123 EileenH

      Posted

      Yes that’s interesting about 4.30 .  Also Eileen, I noticed today that I am 5 mg short, so on the day I see the rhumy next week I can only take 10mg that morning. Do you have any advice? 
    • BettyE
      BettyE michelle06123

      Posted

      Re the shortfall; could you ring your surgery and explain and ask for an early repeat prescription?. I'm not suggesting hoarding but it is not a bad idea to have a little "cushion" as we never can be sure when we might have to adjust our dosage.

    • EileenH
      EileenH michelle06123

      Posted

      Betty's idea is good. Or you could exaggerate a bit to a pharmacist and explain you haven't enough (lost a pack, dropped a few pills) - a lot will sell you some to cover you until you get to the doctor as it is dangerous to just stop them.

    • michelle06123
      michelle06123 EileenH

      Posted

      Thank you both, both are very good ideas. Ile ring the docs for a repeat as they take a day or 2 and ile go into the chemist also and tell I am short. 

      Also, I have taken a flask of tea, a sandwich and my meds  up to be bed for when I wake up with the usual nightly leg/shoulder pains and I will see if that makes my mornings any easier. 

      Sleep well everyone x

  • phyllis48183
    phyllis48183 michelle06123

    Posted

    Eso sorry you are still in pain....My pain completely went away after my first dose..A good rummy is your answer good luck
  • margot34956
    margot34956 michelle06123

    Posted

    Hi Michelle, I am learning so much from this group. Welcome!

    I also started in Nov last year on 15mg. now down to 10. I have never been pain free, but it's not too bad, in that I can still function and go to work.

    I know another who has PMR on the same dose and she is pain free. I am supposing everyone is different.

    All the best to you!

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