To much pred for my size?

Posted , 10 users are following.

I'm so glad I joined this forum - it's so informative and people are so helpful! 

I was recently diagnosed with PMR and prescribed 15mg pred. I queried this at the time with the GP because I'm petite (barely 5ft and approx 45kg) he laughed and said that children from age 12 were prescribed adult dosages when it came to drugs. This was a phone consultation so he couldn't see me. 

I'm reading Kate Gilbert's book and noticed: "a small patient weighing only 50kg would start on 10mg per day..."

What do I do? I've been taking 15mg for 12 days now. The doctor isn't phoning me again for another 3 weeks. Do I just reduce the dosage myself, say to 12.5mg? Or do I have to speak to a doctor before doing anything like that? Or do I just carry on with 15mg as prescribed?

0 likes, 19 replies

19 Replies

  • Posted

    I was a bit surprised to read that a 50kg. patient would start on 10 mgs. I'm 53 Kgs and first time I had PMR I was started on 30 mgs. and the second, when my GP said we would " be a little less aggressive this time, " (  no explanation given. Nowadays I would ask but I must have been shy in those days! ) and  started on 15 but I have to say that the second episode gave me far more reduction problems than the first. No idea whether the starting dose was significant.

    • Posted

      Thanks, Betty. One thing I've learnt so far about PMR is that there are lots of unknowns and grey areas! What a huge difference in the 2 starting doses. 

  • Posted

    I'll be very interested in the responses as I was in the same boat as you, but put on 20 mg pred. Which ended me up in ER having almost an anaphylaxic reaction.  I felt it was too much pred for my body to handle, especially after I had read online that low weight women could be started at 12.5 mg.  however, neither my gp nor the rheumy had ever heard of such a thing--although as I recall, it's on the mayo website too.  

    I dont know know about the source you mentioned, however, I do believe that weight is a consideration.  Hang in there; good advice on this forum.  

    • Posted

      Thanks, Twopies, that's interesting. The book I mentioned is Kate Gilbert's Polymyalgia Rheumatica & Giant Cell Arteritis: a survival guide, 2nd ed. 

      PS - you're right - there's great advice on this forum! 

    • Posted

      That's a good book and the website has more up to date articles to read.??

  • Posted

    MhairiP, how do you feel? Do you have any PMR pain? I personally don't believe in tapering if you have any PMR pain. ??

    • Posted

      I feel ok'ish - tired and some pain/stiffness in my hands in the mornings. A different GP, also on the phone, said my sore hands have nothing to do with PMR. Confused!

    • Posted

      MhairiP, we are all different and it seems to me that PMR effects us all a little different. At one point I could not button my shirt. Listen to your body and act accordingly. We are going to make mistake, error on the side of caution. ☺️
    • Posted

      My hands were very involved - synovitis and tendonitis, RS3PE syndrome is also often found alongside PMR - and it affects hands and feet mainly. Leeds has looked it - their impression is hands and feet are part of PMR - but the lead author is just in the process of evaluating the data to give an official position...
  • Posted

    Kate Gilbert's book is basically wrong on this point - she isn't a scientist and doesn't know a lot about pharmacology. The rest is pretty good about how she lived with PMR - though it is HER journey and in my experience of 9 years on the forums and thousands of patients it really isn't that typical.

    The patient is started on a dose that is plenty to manage the inflammation - and that has nothing to do with your size. It also has to do with the activity of the underlying autoimmune disorder - if it is more active it will need more pred - and the amount of the medication you absorb. In the case of pred, although it is quoted as 70% it actually ranges from 50% to 90% - a small woman may only absorb 50% while their large male neighbour absorbs 90% So the basic dose they need will be different and the woman might need more.There are also other considerations with regard to the way the receptors on your cells that make the pred work link up to the pred.

    The most recent Recommendations say "Use the lowest effective dose in the range 12.5 to 25mg/day". Then you taper the dose to find the lowest dose that manages the symptoms as effectively as the starting dose. This process is called titration and is the way that the dose of all these medications that vary in their bioavailabilty and how they work from patient to patient are adjusted.

    You start on a fairly standard dose - if it doesn't work well you add a bit. If it does work well you take it or 4 to 6 weeks which clears out all the existing inflammation and allows inflamed tissues to heal and then you start to reduce the dose SLOWLY to find the lowest dose that works for you. If you try to reduce too soon or too quickly/in too large steps down you run the risk of a return of symptoms, either because of something called steroid withdrawal (the body protesting at you changing its status too much for comfort) or because you have gone to a dose that isn't enough to manage the daily dose of inflammatory substances shed in the body in the early morning and which cause inflammation and so pain and stiffness.

    To add to what Betty has said - they used to use higher doses and then got worried they were giving patients too much over the time they had the PMR. So they had a look at what dose they needed to get a result - and cut the recommendations down to 15mg. Now they have realised that actually they probably cut it a bit too far for some people - and have increased the amount again. 

    Don't worry - if you had started at a lower dose it would have taken longer to get relief and down to a non-inflamed baseline. If you have any problems speak to your doctor - or ask on here. 

    And while I think about it: you cannot go back to normal duties just because you feel better. The pred only mops up the inflammation that is coursing around your body - it does nothing to the actual underlying disease process, and autoimmune disorder that causes your immune system to attack your body in error because it doesn't recognise it as self, and that chugs away in the background, attacking your body as if it were a foreign invader. This is what causes the fatigue and flu feeling. Your body is intolerant of acute exercise as a result and that you have to manage by pacing and resting appropriately. 

    This is a link to a post on another forum which explains it in a more lighthearted way:

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

    • Posted

      Is there some way to save a post on this forum? Thks
    • Posted

      Thank you, Eileen, for such an in-depth response. I'll have a good look at the links tomorrow. 

      I think I'm guilty of going about 'normal duties' now that the pain is more or less under control! I've had a particularly busy week but from now on I WILL take it easy. Promise! 

    • Posted

      If you go to your profile you will find there a way to access every single post you've made, and every single reply.  It can be tedious to find things, but I have done so, and it is possible, easier if you have a decent idea when the post you are interested in was made.  It is also possible to bookmark specific threads.  

    • Posted

      Hey thanks! I know how to look through my posts, but don’t know how to bookmark. At least, I don’t think I do. 🤓

    • Posted

      Just bookmark the page like you would any other web page.  On my browser there is a little star in the url box and if I click that then I have the ability to bookmark the page I'm on.  It's nothing to do with the Patient website, all to do with your browser.  

    • Posted

      Oh, ok. I know how to do that; I was thinking about the patient website. Wish we could....
    • Posted

      for the most interesting posts I copy from forum to MS Word and then save it in "PMR" folder on my PC.  I just sent you email containing Eileen's post too, so you have it in your inbox

    • Posted

      You can block and copy and paste just as you do with Word. Or bookmark the thread maybe?
    • Posted

      You can find all posts you or anyone else wrote via your profile page. If you meant the post I wrote above - sorry, but I have over 17,000 posts on patient which is rather a lot to plough through!

      Would you believe, when I joined this forum over 9 years ago I read every single post on every thread in the PMRGCA forum! Most of them before ever posting myself redface  Then there was a question I already knew the answer to ...

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