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angela51078 angela51078

Dr suspects PMR

Hi, I’m new to the group my name is Angie I’m 49 yrs old I had surgery in April to remove 2 discs from my cervical spine with fusion, surgery went well and recovery was really good until about 4 weeks ago I started with pain in my groin almost like I had been doing hundreds of squats (I wish 🙂wink it then progressed to both hips both knees and both shoulders to the point where I can’t get up from sitting or lying down the pain is horrendous. I contacted the Walton Centre where I had my surgery and they brought my post op appointment forward to Friday just gone and the specialist suspects PMR. I had an appointment booked at the drs for the afternoon told her what the specialist said and she agreed as the bloods I had done my inflammatory markers were extremely high so she started me on 15mg of prednisilone I took the 3 tablets at 4pm and they started taking affect straight away I had a good nights sleep and took the next lot of tablets at 10am on the Saturday felt loads better and could get around easier dr told me from the Sunday to start taking them in the morning and I’ve not slept all night and the pain is even worse this morning my husband had to help me out of bed and it took 10 minutes for me to get down stairs. Question! Should I be on a higher dose? This is all new to me so any advise would be greatly appreciated. Sorry for the long post Angie x

24 Replies

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  • jones10939 jones10939 angela51078

    I'm no expert - Eileen will be along at sometime today. However if you have time to browse the group posts you will find that the timing and manner of taking the tablets does vary very much between individuals.

    Some in the morning (stand instructions it would seem); some take before retiring and others split the dose.

  • Mrs Hobbles Mrs Hobbles angela51078

    Hi Angie, welcome to group, although I'm sorry that you're in the position that you had to join. You'll get lots of support and great advice here and we have some l lively experts who we all rely on. I'm not one of those experts and only know myownjourney plus the information I've learned on here! It would seem that the 15mgs worked nicely for y oiu initially and to be honest i don't knkw Why they then wouldn't work 2 days in. There are some people who split their doses between morning and evening and there is an explanation to it but I don't really know what it is. It would seem strange to me that you'd need to increase your dose but equally strange that you were in such paon again this morning, i since erely sympathise, it's pretty herrendous! Not to mind mind getting any sleep, this could be to do with the

  • Mrs Hobbles Mrs Hobbles angela51078

    Apologies Angie, that was sent too soon (somehow?)and without corrections, not sure if you can follow it. I was going to suggest trying 20mgs to see if it does make a difference but I know one of our experts will be along soon and will give you good advice. In the meantime i wish you all the best and hope you get relief quickly!

  • BettyE BettyE angela51078

    In eighteen hours your first and second doses  came to 30mgs. and you felt good. Then it was 24 hours before the next dose and symptoms came back with a vengeance so maybe that does indicate that, to get 24 hour relief, you may need a higher dose. 20 mgs as a starter dose is not unusual though lots of doctors start patients on 15. Can you contact your GP by 'phone? S/he might give you the go ahead to try 20mgs. As you are in such pain you really need to act before the inflammation takes a firmer hold.

    If you read around on here you will see that many, even most, have to adjust their doses both at the beginning and as we reduce.  Hardly ever is there a straight line curve with PMR.

    Hope you soon feel better.

     

  • EileenH EileenH angela51078

    If you felt good taking tablets at 4pm and then at 10am next day it sounds as if you are a person for whom the antiinflammatory effect doesn't last the full 24 hours - it varies between 12 and 36 hours for different people. It may be a higher dose might do the job, as Betty suggests you took 30mg in a shorter time than 2 days. The first dose was still working when you took the next dose. The previous dose wasn't still working when you took the dose the next morning so it didn't work as well.

    What time are you taking the pred now? The inflammatory substances are shed in the body about 4.30am - the sooner you take the pred after that - and preferably earlier, at 2am according to a study done in Germany - the less the pred has to do and the better the result you get. Many wake early, take their pred at 5 or 6am (or earlier) and settle down for another couple of hours by which time the pred is working and you are more mobile. A lot of doctors do use a higher dose for patients with a very high level of blood markers or severe symptoms - 15mg is the lower end of the range.

    But i'm intrigued - if you didn't sleep all night, had the pain eased at all and when did it start?

    • angela51078 angela51078 EileenH

      We had a BBQ yesterday for family and I think I naught have overdone it a bit, so I took myself off to bed at 19.30 last night and dosed for a bit but I’m a side sleeper and not used to sleeping on my back I slept with an extra pillow and one under my knees and didn’t really move till I needed the loo at 5.30 this morning my left knee was really bad I couldn’t bend it and shoulders were really painful 😣 so I took the Pred at 6am and got back into bed maybe I should have stayed up. Thank you

    • EileenH EileenH angela51078

      Yes - as soon as I clicked reply I thought - didn't ask if you had gone back to normal duties because you felt so well!!! You have to do your bit by pacing and resting appropriately - the pred only manages the inflammation and the actual disease process is still chugging away in the background attacking the body tissues and making you feel as if you have permanent flu and leaving the muscles unable to tell you you are asking too much of them and unable to repair themselves after activity so delayed onset muscle soreness is more severe and takes longer to resolve.

      This may help you understand a bit about living with PMR! It is on another UK PMRGCA forum.

      https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

      Have you seen our "resources" post with lots of links to info?

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

  • marjorie 109 marjorie 109 angela51078

    I am on 20 mg. I was instructed to take it all in the am. By the next morning I was in such pain again. I now take 10 in the morning and 10 at night six and six. There is a medical reason to take it all in the morning but this works for me and I chose no pain. Good luck on your journey!

     

    • Anhaga Anhaga marjorie 109

      The medical reason is more important for people who are on much shorter term treatments.  It's supposed to help avoid too much adrenal suppression.  However as we are on pred for the long term anyway it doesn't make much difference.  It might be a good idea once you're on the way down and starting to think about your eventual taper to pred zero to consider gradually tapering off all the evening dose, only when you are ready, of course, as the morning dose more closely emulates what the body normally does.  Although I believe there is a smaller bump in cortisol production later in the day anyway, so who knows?  Whatever works for you!

  • Michdonn Michdonn angela51078

    Hi Angela, welcome to our little PMR club. We all understand your pain we have been there. I split my doses 70-80% with breakfast, 20-30% before bed time. I believe you have the take enough Prednisone to get PMR pain free stabilize at that level then start tapering using DSNS slowly. We all here on the forum will be glad to answer your questions. Good luck on your journey, try to stay active and little at a time not over doing it. Stay positive and try to smile. ☺️

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